Professional Documents
Culture Documents
1AC Solvency
DHHS is adequately ensuring private sector compliance with
health privacy protection laws now
Charles Ornstein (senior reporter for ProPublica covering health care and the
pharmaceutical industry) March 20, 2015 Despite A Wave Of Data Breaches, Fed
Says Patient Privacy Isn't Dead http://www.npr.org/sections/healthshots/2015/03/20/394116837/despite-a-wave-of-data-breaches-fed-says-patientprivacy-isn-t-dead
The task of investigating medical data breaches falls to the Office for Civil Rights, a
small agency within the Department of Health and Human Services. Last month,
ProPublica and NPR reported how, as the number of breaches has increased, the
office infrequently uses its authority to fine organizations and health providers that
fail to safeguard patient records. The office's director, Jocelyn Samuels, spoke
Monday to health privacy and security experts gathered in Washington, D.C., for the
National HIPAA Summit, named for the Health Insurance Portability and
Accountability Act. After her talk, Samuels sat down with ProPublica to talk about
the current state of health privacy. The conversation has been edited for length and
clarity. Highlights are below; a fuller version is available on ProPublica's website. To
start off with, the Anthem breach is still at the top of mind for so many people. Does
this change the landscape in terms of health data breaches? We won't know until
after we have investigated what the causes of the Anthem breach are or were, or
whether there are concerns about HIPAA compliance. But I think that it illustrates
both the increasing risks that exist in the cybersecurity space and the need for
covered entities [health providers and others subject to HIPAA's requirements] to
continue to update and evaluate their risk analyses to ensure that their risk
management plans adequately anticipate all of the kinds of threats they may face.
Since HIPAA was passed in 1996, how would you say the state of play has changed
with respect to patient privacy and the security of records? The ability to access
electronic health records is something that we obviously have clarified and
expanded over time since HIPAA was enacted. And I anticipate that we will continue
to evaluate the application of HIPAA standards to emerging issues, whether they are
posed by new technology or new forms of risk that aren't being adequately
addressed. From a macro perspective, we are seeing an explosion of new
approaches to delivering health care, to treating patients, to sharing information.
And that changes on an exceptionally rapid basis, and so ensuring that we are
providing adequate guidance about how HIPAA applies and what the standards are
in these new environments is something that's a high priority. Some people have
suggested that the notion of patient privacy is sort of outmoded and that you really
don't have privacy anymore. Do you accept that? No. I think that you are talking
about some of the most intimate facts about any individual, whether it is their
health condition or their diagnosis or their treatment choices, and that it is really
critical to ensure that they feel confident that that information will be protected
from public disclosure. That's the underlying premise of patient involvement in
health care decision-making, that they can entrust their providers with this really
intimate information knowing that it won't be misused or inappropriately disclosed.
Although there are new threats and cybercriminals get smarter every day, we have
to do our best to keep up and ensure that there are adequate protections in place
so that we can gain the benefits that technology and delivery system reform are
promising. Your office has the ability to issue fines in ways that a lot of federal
agencies can't and in denominations that a lot of federal agencies can't. You've
noted that you used them about two dozen times. Is that enough? You know, each
case depends on its facts and I do think that we have been committed to using
settlement agreements and monetary recoveries in situations where we think that
the conduct has been egregious or where we want to create a deterrent or where
we feel that the monetary settlement will help to reinforce the message that we're
serious about HIPAA compliance. That said, we are very serious about HIPAA
compliance even in situations where we don't seek monetary settlements or civil
money penalties. And I think if you look at our corrective action plans [agreements
in which providers promise to make changes following a complaint], you will see
that those are uniformly robust efforts to ensure that covered entities and business
associates undertake the infrastructure and structural reforms that are necessary to
ensure compliance going forward.
stake satisfies existing tests for a fundamental right. Second, emergent programs
are likely to involve ongoing and increasingly comprehensive surveillance and
analysis of a wide range of personal behaviors. If the interest at stake in emergent
programs is not recognized as fundamental, it is difficult to imagine that
Fourteenth Amendment protection would apply at all to personal privacy outside of
the subject matter domains already specifically identified by courts. The precise
method for determining that a right is fundamentaland therefore protected
under the Due Process Clause of the Fourteenth Amendmentis somewhat
obscure.167 Courts and commentators have suggested that the confusion arises in
part because the Supreme Court employs at least two different tests.168 In
Washington v. Glucksberg, 169 the Supreme Court emphasized the importance of
historical practice and national tradition.170 Since Glucksberg, courts have usually
asked whether the purportedly fundamental right is deeply rooted in this Nations
history and tradition171 to determine whether it is fundamental for the purposes of
the Fourteenth Amendment.172 The first task of a court applying any test is to
characterize the purportedly fundamental interest at stake.173 Emergent public
health surveillance programs present an interesting challenge to doing so, because
they employ new and evolving technologies. As a result, there is not a readily
available concept of the privacy interest actually or potentially invaded, or a
consensus about why it is important. What is clear is that the surveillance at issue
in emergent public health surveillance verges on comprehensive in both depth and
breadth. Given the methods of surveillance and the nature of the health conditions
likely to be targeted, emergent programs may involve the lifetime collection of
information about the behaviors and habits of millions of people. Such surveillance
invades an area of personal privacy that previously challenged programs did not,
and it does so on an unprecedented scale. In addition, there are some
jurisprudential indications that a newand constitutionally significantprivacy
interest is at stake. Courts are currently grappling with the implications for Fourth
Amendment jurisprudence of both continuous surveillance and sophisticated data
analysis capabilities.174 A number of courts have concluded that continuous
government surveillance of public movements has constitutional significance, even
though episodic or shortterm gathering of the same information does not.175
However, even while affirming that there is an important difference between the
privacy interest invaded by information-gathering that is limited in duration or
frequency, and the privacy interest invaded by the continuous gathering of similar
information, courts have generally not explained what it is.176 Fortunately, a
precise definition of the interest invaded by emergent programs is not required: A
fundamental right to personal privacy is deeply rooted in this countrys history and
tradition. A complete account of legal and cultural protections for personal privacy
is far beyond the scope of this paper, but two examples are particularly worth
noting. First, the history of Fourth Amendment jurisprudence demonstrates that the
most sacred of all areas . . . is the home, not because it is a physical structure in
which someone chooses to live, but because there is a societal consensus that
people have virtually unlimited expectations of privacy from intrusions into their
homes.177 A cursory review of Supreme Court cases suggests that we protect the
home at least in part because it serves as a proxy for personal privacy.178
Scholars have made the same observation.179 Moreover, robust Fourth Amendment
behavior is often the root cause of [obesity and obesity-related conditions like
diabetes].193 It is almost a platitude to say that human habits are hard to change,
even when the human involved desperately wants to change them. With respect to
diabetes, a comprehensive review of diabetes research and literature published
between 1985 and 2001 revealed that simply improving the persons level of
knowledge rarely, if ever, led to the type [of] behavior changes necessary to
manage the disease effectively.194 The public health and medical communities
have not yet found a way to induce the kinds of behavioral changes needed both to
reduce the impact of obesity, diabetes and other chronic conditions, and to rein in
escalating health care costs.195 B. Application: Why the A1C Registry Likely Fails
Strict Scrutiny Most commentators assume that a rational basis standard of review
would apply to New York Citys A1C Registry,196 and accordingly predict that the
program would survive a constitutional challenge.197 However, applying the strict
scrutiny analysis outlined in Part A suggests that the A1C Registry may effect an
unconstitutional invasion of privacy. New York City government has a compelling
interest in preventing both diabetes and diabetes-related complications. The
problem is that the A1Cs surveillance model does not enable sufficiently effective
interventions.198 The Department has explained why it believes the A1C Registry is
valuable,199 but its explanation is far from satisfactory. The Departments public
statements suggest that comprehensive, individualized data is the primary value of
the A1C Registry, because it currently enables the government to deliver
feedback and may enable the government to deliver useful services.200 In
addition, the Department believes the existing A1C Registry interventions can
improve patient health outcomes.201 According to the Department, [p]ersonal
identifiers are essential to enable both accurate surveillance and communication
with health care providers about individual patients.202 The Department also
emphasizes the severity of the diabetes epidemic, which it argues warrants an
urgent public health response.203 The A1C Registry interventions likely do have
some value. The patient letters204 inform by telling people that their blood sugar is
poorly managed, by explaining that high blood sugars have adverse health
consequences, and by advising diabetics to get regular medical care.205 However,
there are at least two reasons why informing patients in this manner should not be
considered sufficiently effective to justify the surveillance component of the A1C
Registry. First, the City government is not the best entity to inform diabetics of their
health status and its associated risks. One alternative is community health
providers, which have the significant advantages of (i) interacting with patients
under normal conditions of confidentiality and (ideally) trust, and (ii) being far
better situated to connect patients with resources that may help in each individual
case.206 More fundamentally, the ravages of uncontrolled diabetes are common
knowledge in the communities most heavily impacted by the disease, even if the
quantified risk level associated with each A1C test result is not.207 Second, the
benefit of an unsolicited letter stating that the recipient is unhealthy seems dubious
at best. After all, far more resourceintensive programs intended to help willing
diabetic participants make needed lifestyle changes have achieved very modest
and short-lived success.208 The letters to health care providers identifying at-risk
patients are arguably more valuable. But again, how valuable? Improving the health
outcomes of a diabetic requires at least the following additional steps: (i) the doctor
contacts the patient, (ii) the patient visits the doctor, and (iii) the patient
implements the doctors recommendations. The diabetics who testified at the
Departments 2005 hearing strongly contested the utility of provider letters.209
Increasingly, health care providers also recognize that the principal obstacles to
successful diabetes management are practical, not informational. Accordingly, some
experts have called for a new approach to treating diabetes, which emphasizes
identifying and resolving the practical barriers that prevent each individual diabetic
from making needed behavioral changes.210 Easy modifications to the surveillance
component of the A1C Registry surveillance would remove doubt about its
constitutional status. For example, the program could be consent based, like
Vermonts diabetes registry.211 Consent would remove privacy concerns; in
addition, people who opt in to the program are presumably indicating that they
would benefit from reminders about their health status. Alternatively (or
additionally), the A1C Registry could identify patients by community or health
center, instead of by name and personal information. That method would enable
city government to direct resources to the communities that need them most.
Advocates of the A1C Registry describe diabetes in New York City as a public health
crisis, a financial crisis, and a raging epidemic.212 The rhetoric used by public
health officials legitimately concerned about the physical and financial tolls of
chronic disease has been useful in bringing public attention to the destructive
power of conditions that often seem mundane and undramatic.213 But the rhetoric
is also profoundly misleading.214 Those who use the word epidemic argue that
diabetes is so like an infectious disease that it should be treated as one.215 But
diabetes is like an infectious disease only in the sense that it is widespread and
increasingly prevalent. Unlike infectious disease, it cannot be stopped by
government intervention in the lives of people who have it.216 Proponents also cite
the cost of chronic disease and related complications as a justification for emergent
public health surveillance.217 That argument implies, without explaining, that
financial crisisas opposed to a direct threat to the public healthjustifies intimate
medical privacy intrusions. Coupling the rhetoric of crisis with a call for
government action suggests that government action can effectively address the
crisis. My limited claim here is that the A1C Registrys model of ongoing,
comprehensive, and individualized surveillance may not enable government
interventions that sufficiently mitigate risk to the Citys diabetics. CONCLUSION
Emergent public health surveillance programs adopt a surveillance model that was
developed in the context of infectious disease and apply it to non-communicable
health conditions. But the original justification for the extreme privacy invasions at
the heart of individualized surveillance no longer applies. In addition, the emergent
public health surveillance model shares three features with security surveillance, all
of which have been identified as sources of troubling privacy invasions, and at least
one of which is changing Fourth Amendment analysis. Courts should recognize that
diabetes, obesity, and other chronic conditions that threaten the public health
implicate highly personal information, including sensitive medical data and a wide
array of personal behaviors. As a result, ongoing, name-based surveillance of
populations with those conditions effects an extremely intimate privacy invasion.
Applying strict scrutiny to emergent public health surveillance programs would
permit those invasions only to the extent necessary to successfully mitigate the risk
from diabetes and other chronic diseases.
The result of a balanced strict scrutiny standard is flexible privacy regulation and oversight federal implementation is
key
Jason Kreag (Visiting Assistant Professor, University of Arizona James E. Rogers
College of Law) 2015 GOING LOCAL: THE FRAGMENTATION OF GENETIC
SURVEILLANCE http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2583957
In addition, where we do have information about local procedures, it is clear that
there remains significant variation in the use of this tool.293 Furthermore, it is also
difficult to design an effective regulatory scheme in this context because the
technology itself is evolving and because our understanding of whether forensic
DNA profiles may ultimately be used to predict behavioral traits remains limited.294
As such, any proposed regulations should be flexible. With these limitations in mind,
this Section outlines five substantive regulations that should be adopted to oversee
the use of local databases. Two scholars have previously proposed regulations that
would severely curtail law enforcements use of these databases. For example,
Professor Elizabeth Joh has proposed that law enforcement should be required to
obtain a warrant whenever police seek abandoned DNA from a targeted
person.295 Professor Wayne Logan has gone further, recommending that the
government should be barred from using identity evidence secured from a lawful
arrestee for any purpose other than identity verification.296 The recommendations
offered below would not go as far. However, they would help limit many of the
potential negative implications of local databases while at the same time leaving
sufficient room for law enforcement to expand its use of DNA to high-volume crimes.
1. Requiring Adequate Record Keeping Maintaining adequate and accurate
records is crucial to regulating law enforcements use of local databases.297
Agencies using local databases should be required to record aggregate data
regarding the DNA profiles in their databases. This information should include the
percentage of DNA profiles from known individuals versus profiles derived from
crime-scene evidence. Furthermore, the DNA profiles from known individuals should
be further disaggregated. For example, regulations should mandate the collection of
information regarding whether the known profiles were collected by consent, from
abandoned biological material, or surreptitiously. Law enforcement should also be
required to collect information regarding the sources of the known DNA profiles.
That is, was the profile generated from a suspect, a victim, a victims family
member, or a witness? Finally, regulations should require the collection of data on
the age, race, and gender of the individuals whose profiles are in local databases. In
addition to collecting this aggregate data, law enforcement should be required to
track these same categories for each individual officer who collects reference
samples. Finally, this data should be recorded in a manner that makes it readily
accessible. If law enforcement is not required to collect this information, it will be
difficult to monitor whether local databases are utilized in a fair manner and if their
burdens are sufficiently distributed.298 This is particularly true because law
should at least be required to disclose its plans for the sample. If those plans include
adding the profile to law enforcements database, then that should be made clear.
Such a requirement would help ensure that the consent was truly voluntary. 3.
Prohibiting the Inclusion of Victim DNA Profiles Regulations should prohibit
local law enforcement from including DNA profiles from victims in local databases.
The practice of including victims profiles is driven by law enforcements
presumption that there is often overlap between crime victims and perpetrators.308
Indeed, many law enforcement officials interviewed during this project repeated
variations on the phrase, Todays victim is tomorrows perpetrator. Without
questioning the accuracy of this presumption, there remain many reasons to
prohibit law enforcement from including victim profiles in local databases. Crime
victims seek the assistance of law enforcement to remedy the wrong they faced. In
the context of the property crimes that are often the focus of local databases,
victims seek to recover their belongings, to obtain a police report needed to file an
insurance claim, or simply to alert law enforcement that an offender has targeted
them so as to help law enforcement identify patterns or develop leads. In reporting
crimes to police, victims voluntarily give up some privacy. Reporting the crime may
mean that law enforcement enters their home, takes a statement from them, talks
to other potential witnesses, and, in some cases, collects a DNA sample for
elimination purposes. To the extent that law enforcement turns the tables on a
victim, making the victim the target of law enforcements broader investigative and
surveillance activities, they undermine the justification for their initial intrusion.
Collecting DNA samples from victims for inclusion in databases adds a significant
cost to what victims must already bear when reporting a crime. Such a practice
requires victims not only to submit to the immediate invasion of privacy that results
from seeking law enforcements help, but it also requires victims to submit to a
lifetime of genetic surveillance. This cost will undoubtedly cause some victims to
avoid calling police. Others may reluctantly seek assistance from police, but they
will remain dismayed that they were required to pay a genetic-surveillance tax in
exchange for police assistance. 4. Time Limits for Suspect DNA Profile
Retention Regulations should address how long law enforcement is able to retain
DNA profiles in local databases. For example, if police collect a consensual sample
from a 22-year-old suspect that an officer stopped while walking down the street in
a manner that caught the officers attention, that profile should be removed
automatically from the database after five or 10 years if, during that period, the
profile had not been matched to a crime-scene DNA profile. Such a regulation would
at least cap what would otherwise have been a lifetime of genetic surveillance for
the 22-year-old for simply appearing suspicious. Given the Supreme Courts holding
in Maryland v. King, in which it upheld the constitutionality of collecting DNA
samples from arrestees,309 the time limit restrictions could be limited to samples
collected from mere suspects, as opposed those arrested or convicted of crimes.310
5. Monitoring Use Regulations should also require adequate procedures to ensure
that individual officers do not abuse the use of local databases.311 For example, the
architect of Palm Bays database emphasized his stern warning that officers not use
the database for personal snooping.312 But stern warnings are not enough. The
infrastructure for local databases already includes the ability to monitor individual
users. For example, SmallPond includes a feature called Audit Trail, which produces
a record of every user interaction with the system, including which searches where
performed and which DNA profiles were uploaded.313 Given that this tool is readily
available, law enforcement agencies should be required to utilize it to help ensure
against misuse.314 D. Implementing Reforms Despite the dearth of statutory or
constitutional restrictions of local databases,315 there is reason to believe that the
reforms outlined above could be adopted. Legislatures have demonstrated the
ability to protect privacy interests in other settings, most notably demonstrating a
remarkable nimbleness in quickly passing legislation regarding law enforcements
use of drones.316 Additionally, the Courts interpretation of the reach of the Fourth
Amendment may evolve.317 Furthermore, the promise of at least some minimal
external regulation is more likely given that some of the early adopters of local
databases have indicated an openness to regulation.318 The most effective way to
implement the reforms recommended in Part III.C. is through federal legislation.
Given that federal laws already regulate law enforcements use of genetic
surveillance in CODIS, there is precedent for federal regulation in this space. One
obvious challenge to such regulation is ensuring that regulations are sufficiently
flexible to allow law enforcement to continue using local databases while limiting
the external costs discussed in Part II. The reforms offered here are designed to
provide that flexibility. A new federal law could follow the statutory model used for
CODIS. For example, current federal law requires states to certify their compliance
with quality standards for DNA processing and with privacy protections for genetic
information in order to qualify for participation in CODIS.319 A new, expanded law
could require that in exchange for participation in CODIS, states certify that local
databases in their jurisdictions follow the five reforms outlined above. There is good
reason to expect that such a law would quickly cause states to comply.320 While
local databases are expanding, states still value their participation in CODIS.321
Such a regulatory structure would also respect the ability of states to adopt stricter
limits on the use of local databases.322 While a federal law would be most effective,
there are other options to achieve some of the benefits of the reforms outlined in
Part III.C. For example, each state could be encouraged to adopt a model statute
that includes these reforms. The prospect of quick action by each state seems
considerably less likely to occur without the stick of being excluded from CODIS that
could be a part of federal regulation. However, Alaska, Vermont, and Washington
have demonstrated that some states are capable of regulating local databases. In
addition, there are options aside from legislation. Existing regulatory bodies could
promote these reforms as best practices for local DNA databases. For example, the
recently created National Commission on Forensic Science (NCFS), a joint project
of the Department of Justice and the National Institute of Standards and Technology
(NIST), describes part of its mission as reduc[ing] fragmentation and
improve[ing] federal coordination of forensic science.323 Similarly, NISTs newlyformed Organization of Scientific Area Committees (OSACs) represents another
potential source for external regulation.324 Whereas the NCSF will outline broad
policies, the OSACs are designed to adopt specific standards and guidelines for
each forensic discipline.325 These organizations, which include national leaders
from law enforcement, practice, and academia, are limited to adopting non-binding
recommendations. However, even recommended procedures could be powerful
forces to alter current practices.
or a failure to exercise. For example, the Patient Protection and Affordable Care Act
of 2010 (Obamacare) requires federal officials to gather outcomes data from
employers who provide employees with access to wellness programs.254 As the
public learns about government patient tracking and health surveillance, hospitals
and clinics may be seen as intrusive arms of the governments data
collection process rather than caring and trusted institutions. Thus,
government health surveillance through state and federal reporting mandates
threatens to diminish patient trust and violates the freedom and privacy rights of all
Americans. As government lays hold of the most private of individual data, patients
may also lose access to the full realm of private medical choices. Their willingness
to engage with the health care system may be limited by their unwillingness to give
up their privacy rights. A 1999 study found 15 percent of Americans already
engaged in privacy-protecting behaviors that compromise their access to timely and
accurate medical care.2
asked to disclose detailed, sensitive information about themselves and their family members.4 They are beginning
to understand, however, that the open-ende waivers for disclosure signed by patients as a condition of treatment
and payment leave them vulnerable to a wide array of uses and reuses of their health information. In reaction,
the front end will lack integrity and reliability as it moves through the
health care system.
evolution/553-from-outside-to-inside-environmental-microorganisms-as-humanpathogens)
The key difference between environmental pathogens and other human pathogens
is their ability to survive and thrive outside the host. Their widespread occurrence
in the environment makes them difficult to monitor and control. Inroads have been
made to understand the persistence of these organisms in the environment, the
reservoirs they inhabit, the ways they exchange virulence factors, and their
diversity, but a great deal more research is needed. By grouping together
phylogenetically diverse organisms under the umbrella of "environmental
pathogens," it is hoped that the topic can gain the critical mass needed for
sustained progress. Colloquium participants examined other research needs for
the field, including the diagnostic and environmental technologies that will be
necessary for taking the next steps. It was agreed that because of the complex
nature of studying organisms that can exist in the environment and in human hosts,
work in this area is best carried out in an interdisciplinary fashion with coordinated
input from medical, molecular, and environmental microbiologists, specialists in
host responses, epidemiologists, ecologists, environmental engineers, and public
health experts. The development of improved diagnostic techniques is critical for
accurate assessment of health risks and potential human or animal population
impact associated with environmental pathogens. If the impacts of these diseases
are to be effectively controlled, the techniques used to monitor and control
infections by environmental pathogensincluding interventions, exposure controls,
drugs, and vaccines require improvement. The processes surrounding drug and
vaccine development must be tailored to the special problem of environmental
pathogens, which often strike small numbers of individuals or individuals in less
developed areas of the world and, therefore, offer less potential for drug
development profit than more common diseases. A challenge exists, therefore, in
meeting the need for targeted, specific interventions, including development of
drugs and vaccines for infections by environmental agents, in the face of a lack of
financial incentive for development of these tools.
its recent decline, and what we can all do to rebuild trust in our profession. Trust is intrinsic to the relationship
between citizens around the world and the institutions that serve their needs: government, education, business,
religion, and, most certainly, medicine. Albert Einstein recognized the importance of trust when he said, Every
kind of peaceful cooperation among men is primarily based on mutual trust.1 In our time, trust has been broken,
abused, misplaced, and violated. The media have been replete with commentaries, citing stories of negligence,
corruption, and betrayal by individuals and groups in the public and private sectors, from governments to
corporations, from educational institutions to the Olympic Organizing Committee. These all are front-page news.
Perhaps the most extreme example is terrorism, in which strangers use acts of violence to shatter trust and splinter
society in an ongoing assault on our shared reverence for human life. Unfortunately, we are not immune in our own
sphere of cardiovascular medicine. The physician-investigator conflicts of interest concerning enrollment of patients
in clinical trials, the focus on medical and nursing errors, the high-profile medical malpractice cases, the mandate to
control the cost of health care in ways that may not be aligned with the best interest of the patientall of these
undermine trust in our profession. At this time, when more and more public and private institutions have fallen in
public esteem, restoring trust in the healthcare professions will require that we understand the importance of trust
and the implications of its absence. Trust is intuitive confidence and a sense of comfort that comes from the belief
that we can rely on an individual or organization to perform competently, responsibly, and in a manner considerate
of our interests.2 It is dynamic, it is fragile, and it is vulnerable. Trust can be damaged, but it can be repaired and
restored. It is praised where it is evident and acknowledged in every profession. Yet it is very difficult to define and
quantify. Trust is easier to understand than to measure. For us, trust may be particularly difficult to embrace
because it is not a science. Few instruments have been designed to allow us to evaluate it with any scientific rigor.
trust is inherent to our profession, precisely because patients turn to us in their most
vulnerable moments, for knowledge about their health and disease. We know trust
when we experience it: when we advise patients in need of highly technical procedures that
are associated with increased risk or when we return from being away to learn that our patient who
Yet,
became ill waited for us to make a decision and to discuss their concerns, despite being surrounded by competent
little foundation in our medical heritage. In fact, a review of the early history of medicine is astonishingly devoid of
medical ethics. Even the Codes and Principles of Ethics of the American Medical Association, founded in 1847,
required patients to place total trust in their physicians judgment, to obey promptly, and to entertain a just and
enduring sense of value of the services rendered.6 Such a bold assertion of the authority of the physician and the
gratitude of the patient seems unimaginable today. It was not until the early 1920s that role models such as
Bostons Richard Cabot linked patient-centered medical ethics with the best that scientific medicine had to offer,6
and Frances Weld Peabody, the first Director of the Thorndike Memorial Laboratory at the Boston City Hospital,
crystallized the ethical obligation of the physician to his patient in his essay The Care of the Patient.7 In one
particularly insightful passage, Peabody captures the essence of the two elements of the physicians ethical
obligation: He must know his professional business and he must trouble to know the patient well enough to draw
conclusions, jointly with the patient, as to what actions are indeed in the patients best interest. He states: The
The Ebola
emergency reminds us that we now have the conditions for a perfect microbial
storm. Most human infectious diseases originated in animals and, as human populations and their
road networks expand, as we clear more land for agriculture, hunt for wildlife and trade
more animals, they are coming into contact with more animal diseases , explains Angela
ecosystems but, importantly, of allowing so many of the planet's human inhabitants to live in poverty.
McLean of Oxford University's Institute for Emerging Infections. Meanwhile, we are increasingly farming vast numbers of domestic
Peter Daszak, now president of the EcoHealth Alliance, Kate Jones of the Institute of Zoology and University College London, and
colleagues from Columbia University, New York, analysed 335 emerging diseases from 1940 to 2004. Maps which correlated disease
pandemic started from human contact with chimps and sooty mangabey monkeys; recent outbreaks of SARS (Severe acute
respiratory syndrome) originated in Chinese bats; CJD (Creutzfeldt-Jakob disease) in cattle; and MERS (Middle East Respiratory
Syndrome) to camels. The Zare subtype of the Ebola virus responsible for human outbreaks in Gabon and the Republic of the Congo
was linked to the handling of the carcasses of great apes that in turn had been infected by fruit bats. The global map of emerging
disease revealed the hotspots span sub-Saharan Africa, India and China, with smaller spots in Europe, and North and South America.
They tend not to be in the richer countries in the North that can afford surveillance but in relatively impoverished areas such as the
tropics, a region rich in wildlife species and under increasing human pressure, and in dense human populations, where one would
expect them to take hold more easily. The risks are now worse than suggested in their 2008 study, says co-author Marc Levy,
deputy director of the Center for International Earth Science Information Network at Columbia University in New York. They had
assumed populations would fall faster than they have. Moreover, political violence and instability has "led to refugee flows and
deliberate incursions into wild areas where rebels find timber, wildlife and minerals to finance their activities. In the case of Ebola,
we have also seen that it is
is low". In 2010, another study also involving Jones and Daszak, showed that species losses in ecosystems spur rises in
pathogens as we intrude into areas of high biodiversity. This is significant because current extinction rates are estimated
at 100 to 1,000 times higher than in past epochs, and are projected to increase at least a thousand times
more in the next 50 years.
calling on international donors philanthropic and governmental alike to work with the Review on Antimicrobial Resistance to create a new fund to
support R&D in this important area. The fund will provide grants for blue-sky science and act as a non-profit incubator for promising discoveries. Over the
coming months, the Review will be working out the details of how such a fund could operate effectively. The problem is straightforward: as valuable as
scientific breakthroughs may be, it takes a lot of work to turn them into marketable drugs. And, because antibiotics generally produce low and
sometimes even negative returns on investment for the pharmaceutical makers that develop them, many companies and venture capital funds steer
clear. The Review is studying ways to align financial incentives for developing new antimicrobial drugs more closely with these medicines true social
value. But
. New drugs take decades to discover and develop. Even if we were to fix every problem in the
development pipeline today, it would be at least another 10 years before the first new antibiotics became commercially available. In the coming months,
the Review will make recommendations regarding market incentives for developing new antibiotics and searching for potential alternatives such as
vaccines to the use of these drugs in agriculture. The Review will also highlight innovative approaches to addressing resistance. In its most recent paper,
develop new drugs, the fund should encourage research into diagnostic tools, surveillance methods, techniques to slow the development of resistance,
people who will solve the problem. Evidence seems to show that young scientists and doctors are reluctant to enter fields related to antimicrobial
We need to nurture the next generation of academics, scientists, hospital workers, and
pharmaceutical technicians.
resistance.
legal challenge it has faced.12 And it has delivered many law enforcement
victories.13 Nonetheless, many local agencies have turned away from CODIS to set
up their own local databases.14 Despite the emergence of local databases as a core
investigative tool, scholars and courts have not focused on their creation or use.15
This is in stark contrast to the comprehensive attention paid to CODIS.16 This
Article seeks to shift scholarly attention from CODIS to these local databases. The
analysis of local databases usually amounts to a paragraph or a few sentences in a
larger critique of CODIS, in which the commentator either pans their use, labeling
them "rogue" databases, or notes their promise as a new tool that can reduce
crime, lock up offenders who would have otherwise escaped detection, and
generally revolutionize policing. This paltry coverage contrasts with the buzz local
databases have received in other circles. The topic has received significant
attention in police trade publications,17 and early adopters have offered
unvarnished praise.18 Proponents of local databases argue that freedom from
CODISs regulations allows police to maximize the potential of genetic surveillance
to solve crime. This belief has led several early adopters to become evangelists for
local databases, recruiting other police departments to create their own
databases.19 These proponents herald local databases as a solution to an
assortment of policing challenges, arguing that they increase clearance rates while
using fewer resources than other investigative methods; deter criminal activity;
decrease the opportunity for latent biases and negative stereotypes to affect
policing decisions; and strengthen the publics perception of the police.20 No doubt,
this list of positive attributes is what the Supreme Court envisioned when it
concluded that DNA has the potential to significantly improve both the criminal
justice system and police investigative practices.21 It is true that law
enforcements use of local databases has the potential to yield positive
outcomes,22 but these benefits must be weighed against the negative effects of
expanded use. The external harms of local databases arise from the gulf between
how law enforcement is permitted to use CODIS and the wild west of genetic
surveillance practices currently permitted with local databases.23 For example, like
CODIS, local databases include genetic profiles from convicted individuals and
arrestees. However, they also often include genetic profiles of suspects (including
juvenile suspects), witnesses, crime victims, family members of victims, and
citizens who responded to police DNA dragnets, which sometimes follow violent,
unsolved crimes. Furthermore, local agencies are free to search these databases
however they see fit, unconstrained by the regulations Congress adopted when it
authorized CODIS24 and the additional regulations the FBI promulgated for
CODIS.25 As a result, local databases amplify some of the same external harms
generated by CODIS while simultaneously generating new ones. These harms
include exacerbating racial inequities, threatening privacy and dignity interests, and
undermining the legitimacy of law enforcement. While local databases have the
potential to mitigate some of the racial inequities in the criminal justice system by
replacing police reliance on intuition and hunches with more reliable investigative
leads based on DNA evidence,26 local databases increase distributional inequities
because local police have total discretion about who to target for inclusion in these
databases. This has resulted in police seeking out the usual suspectspoor
people of colorto secure DNA samples for these databases.27 These databases
threaten privacy and dignity interests in several ways. With respect to privacy, they
increase surveillance on innocent, lawabiding citizens, expand the use of familial
DNA searching, and have the potential to limit self-expression and selfdetermination for targeted individuals.28 Furthermore, they impose dignity costs in
the short- and longterm. There is the immediate indignity and stigma associated
with being stopped by police in public to provide a DNA sample.29 And there is the
long-term dignity cost when these stops communicate that someone needs to be
watchednot because he was arrested or convicted, but based on law
enforcements belief that he will be a future criminal. Collectively, these costs carry
the potential to undermine the legitimacy of law enforcement.30 As local agencies
circumvented the federal regulations that govern CODIS by creating their own
databases, legislatures and courts have remained aloof, allowing these databases to
evolve with little oversight. However, the external costs generated by local
databases demonstrate the need for regulation; the current reliance on selfregulation is not sufficient. Law enforcements success is commonly measured by a
narrow focus on crime rates and clearance rates. As a result, police chiefs lack
incentives to identify and measure external costs of surveillance practices.31
Current external regulations of genetic surveillance are also insufficient. The vast
majority of local databases operate outside of federal and state statutory
regulations.32 Furthermore, these databases operate largely beyond the reach of
the Fourth Amendment because of their extensive reliance on obtaining DNA
samples by consent or from abandoned DNA.33 This freedom from regulation was
welcomed by early adopters of local databases. It was a driving force behind their
creation.34 However, even proponents of local databases recognize the value in
embracing some external regulations.35 This Article offers five modest yet effective
proposals for reform.36 First, the Article calls for a robust mandatory record-keeping
scheme designed to minimize the potential for local databases to diminish privacy
and dignity interests and to exacerbate existing racial inequities in the criminal
justice system. This requirement will largely monitor the inputs of local databases
e.g., what profiles are included, from whom were they collected, and in what
manner were they secured. Second, the Article proposes that law enforcement must
have some minimal level of suspicion before seeking consensual DNA samples from
people who cannot be compelled to provide DNA samplesi.e., people other than
arrestees and convicted individualsand that, when seeking consensual DNA
samples, law enforcement must clearly disclose its intent to add the resulting profile
to its local database. This will curb law enforcements ability to populate local
databases with the usual suspects, a practice that will result in a disproportionate
number of profiles from people of color and other demographic minorities. Third, the
Article calls for prohibiting the inclusion of DNA profiles from victims. This will limit
the crime-solving power of local databases because the line between victims and
perpetrators often shifts over time. Nevertheless, it will help to ensure that victims
do not have to pay a genetic surveillance tax in exchange for police assistance.
Fourth, the Article proposes a time limit for retaining DNA profiles from suspects to
counter the negative implications of the necessarily over-inclusive nature of local
databases and to minimize the privacy costs they inflict.37 Finally, the Article
proposes comprehensive monitoring of local databases, including tracking what
searches are performed in order to monitor outputs and to deter deliberate misuse.
If reforms are not adopted, the negative effects of local databases will remain
unchecked. Future empirical work will be needed to accurately measure these
external costs, but it is certainly possible that they will outweigh the immediate
crime-solving power of local databases. If that turns out to be the case, two options
remain for regulating local databases. First, states could follow Vermonts lead and
abolish all non-CODIS databases.38 Second, states could take the opposite
approach and pursue population-wide databases. The latter option at least would
address some of the negative externalities of local databases by more fairly
distributing the burdens of genetic surveillance across the population. Having
outlined its path in detail, the Article proceeds as follows. Part I sets the landscape,
documenting the fragmentation of genetic surveillance and explaining its causes.
These causes include law enforcements perception that CODIS is over-regulated,
advancements in forensic DNA processing combined with decreasing costs, federal
funding that has allowed agencies to bypass local political and budgetary processes,
and a nascent genetic surveillance-industrial complex. After describing the
expansion of local databases, Part I provides a detailed description of the operations
of the local databases in Palm Bay, Florida; Bensalem Township, Pennsylvania; and
the state of Arizona. This Section fills a large hole in our collective knowledge of law
enforcements use of genetic surveillance. Part II identifies and examines the
implications of the expansion of local databases, including analyzing their external
costs. This analysis is particularly important because the issues raised by local
databases do not map directly onto those raised by CODIS. This critique sets the
stage for Part III, which identifies five reforms for local databases and explains how
these reforms can be implemented.
information may change over the course of his or her lifetime (e.g., people being
diagnosed with diabetes, asthma, high cholesterol, or heart disease well into
adulthood), but with the exception of mutations, DNA does not change over time.
[clviii] An individuals medical information may have implications for others (e.g., a
virus infection has implications for others as the infected person may get others
sick), just as DNA has implications for individuals other than the person from whom
the information was derived.[clix] However, the implications of medical information
are not as serious as those of DNA, which involve invading the privacy of a persons
family when no family member is guilty of any wrongdoing. Close relatives such as
parents, siblings and children share about fifty percent of each others genetic
variants and STR lengths, and more distant relatives such as uncles, aunts,
nephews, nieces, grandparents, grandchildren, and half-siblings share about twentyfive percent of each others DNA variants.[clx] Thus, using partial matches to
identify potential suspects radically expands the power and purpose of DNA
databases, implicating a number of people who may have nothing to do with the
original crime. There are substantial differences between DNA profiles and ordinary
fingerprints and it trivializes DNA to call a DNA profile a genetic fingerprint.[clxi]
Fingerprints are two-dimensional representations of the physical attributes of
fingertips and provide no information about a person other than identity.[clxii] In
addition to providing an individuals identity, DNA can also provide medical
characteristics, physical attributes, who the individual may be related to, and other
personal information that, in the wrong hands, can perpetuate discriminatory
practices.[clxiii] Whereas a latent fingerprint provides a fixed amount of information,
all of which is used by the forensic scientist, a DNA sample provides a wealth of
information and the forensic scientist has substantial control over the amount of
information to be obtained from the sample.[clxiv] DNA is more probative than
fingerprints because unlike fingerprints which establish that a suspect was present
at a location and does not automatically imply guilt, it is more difficult to advance
innocent reasons for the presence of DNA in the form of bodily fluids.[clxv] These
differences are relevant to how DNA databases should be used and maintained,
especially considering the privacy concerns unique to DNA. Proponents of DNA
databases claim that DNA profiles consist merely of junk DNA that is incapable of
revealing information about an individuals genetic make-up or health.[clxvi]
However, a British team has discovered that the standard DNA profile contains a
subtle signature which can be linked to a persons susceptibility to type 1 diabetes.
[clxvii] This research was buried in an academic paper, did not comment on the
implications for forensic science, and has been overlooked by the forensic and legal
communities.[clxviii] DNA forensic testing relies on the principle that DNA profiles
are only useful for identification, which is how people justify storing DNA profiles on
law enforcement computers because they do not infringe anyones medical privacy.
[clxix] Sir Alec Jeffreys was a member of the research team that made this
discovery, and he predicted that further troubling links between DNA fingerprints
and disease will emerge as scientists probe the completed draft of the human
genome.[clxx] The U.S. has failed to employ comprehensive privacy regulations
that would prevent the government from sharing DNA profiles in a DNA database
with other groups, such as insurance companies, employers, or academia.[clxxi]
DNA database statutes can be grouped into broad categories based on authorized
uses of both DNA profiles and raw DNA samples: 1) statutes that allow access to
DNA for non-law enforcement purposes, 2) statutes that allow access to DNA
information to public officials other than law enforcement, 3) statutes that allow law
enforcement to use DNA evidence for purposes other than identification, and 4)
statutes that do not require expungement of DNA records upon reversal.[clxxii]
Some state laws, such as Massachusetts, Louisiana and North Carolina, include a
vague, open-ended authorization that allows the database to be used for other
humanitarian purposes. [clxxiii] Alabamas statute explicitly authorizes the creation
and use of a DNA population statistical database to provide data relative to the
causation, detection and prevention of disease or disability, as well as to assist in
educational or medical research.[clxxiv] Mississippis law authorizes the Mississippi
Crime Laboratory to determine any restrictions, and Utahs law provides insurance
companies, psychologists, and other third parties with access to information in the
state DNA database.[clxxv] Some argue that creating a whole-population database
is logical because a larger database is more useful than a smaller one, and it has
the added effect of purging racial bias from the system, thereby avoiding criticisms
of discrimination that result from selective sampling of the population.[clxxvi]
However, this alone is insufficient to justify a whole-population database, and for
many the critical factor is not merely the creation of a whole-population database of
genetic profiles, but the retention of all of the DNA samples used to generate the
genetic profiles. The potential for the government to use the DNA samples for a
purpose not originally conceived of at the time that the DNA sample was obtained is
frightening. The problem of function creep will be explored in the next section. The
United States, Germany, and other countries have been guilty of implementing
national programs in the name of eugenics that clearly violated human rights.
[clxxvii] The eugenics movement lost credibility after the rise of Nazism in the
1930s, but re-emerged as a scientific endeavor and social issue following the
advent of biotechnology in the 1970s.[clxxviii] Science fiction literature and movies
have dealt with the issue of new eugenics the use of technology to make
directed changes to human evolution.[clxxix] These works convey the danger that
the ability to manipulate an individuals genetic makeup will result in removing
physical and behavioral traits not desired by society as a whole.[clxxx] The movie
GATTACA is an example projecting, from current knowledge and technology, a world
where the new eugenics is a reality.[clxxxi] If researchers are able to access the
DNA profiles or DNA samples accumulated pursuant to a DNA database statute,
they will inevitably try to identify the genes responsible for particular traits.
Thousands of citizens would essentially be contributing to this future reality without
their knowledge or consent. This reality is not as far off as some may think.
President George W. Bush enacted the Newborn Screening Lives Act in April 2008,
which mandates the screening of the DNA of all newborn babies in the U.S., and
sections of the bill make it clear that the DNA may be retained and later used in
genetic experiments and tests.[clxxxii] In addition, all 50 states now routinely
provide the results of such tests to the Department of Homeland Security.[clxxxiii]
The National Conference of State Legislatures has created a list of the various
statutes or regulatory provisions by state under which newborns DNA is being
collected.[clxxxiv] IX. Function Creep State and federal DNA database statutes
include no provisions for destroying DNA samples once a DNA profile for inclusion in
CODIS has been generated.[clxxxv] Proponents of forensic DNA testing claim that
retaining DNA samples is necessary because science and technology is constantly
improving and these samples may yield more information in the future.[clxxxvi] Paul
Ferrara, Director of Virginias DNA program, additionally claims that retaining DNA
samples is necessary so that agencies can rerun DNA profiles to verify cold hits
before notifying law enforcement agencies to further investigate, and that agencies
encounter many different situations requiring consultation with original database
samples.[clxxxvii] The term function creep refers to the operationally driven use of
the existing resource for new purposes not envisaged when the resource was
established, which is made possible by technological innovation and lack of
inhibiting measures like public opposition or legislation.[clxxxviii] Historically,
databases that were created in the U.S. for a discrete purpose were eventually
assigned new functions and purposes.[clxxxix] The government began issuing
drivers licenses in the name of public safety, and yet the average adult American
citizen now has more direct dealings with government through licensing and
regulation of the automobile than through any other single public activity.[cxc]
Eventually, states began earning millions of dollars per year from selling drivers
personal information to direct marketers, charities, political campaigns and various
commercial interests.[cxci] An unintended consequence of this practice was the real
threat to public safety. In some instances, abuse of drivers personal information
lead to murders.[cxcii] Congress reacted by passing the Drivers Privacy Protection
Act, which effectively prohibits the disclosure of personal information obtained in
connection with a motor vehicle record for unauthorized uses unless the individual
waives his or her right to privacy.[cxciii] The U.S. Supreme Court upheld the
constitutionality of the Drivers Privacy Protection Act, reasoning that it is a proper
exercise of Congress authority to regulate interstate commerce under the
Commerce Clause and does not violate principles of federalism contained in the
Tenth Amendment.[cxciv] The government introduced social security numbers
(SSNs) to track individuals accounts within the Social Security Program in 1935.
[cxcv] Executive Order 9397, issued in 1943, expanded its use by requiring federal
agencies to use SSNs exclusively whenever a new identification system for
individuals needed to be created.[cxcvi] Eventually, the Internal Revenue Service
adopted the SSN as its official taxpayer identification number and the Department
of Defense began using SSNs to identify Armed Forces personnel. [cxcvii] Then
during the 1970s, the Bank Records and Foreign Transactions Act required all
financial institutions to obtain the SSNs of all of their customers, the Privacy Act
authorized local governments to use SSNs, and the Tax Reform Act authorized
registration authorities of a state or local tax, welfare, drivers license, or motor
vehicle registration to use SSNs to establish identities.[cxcviii] Finally, in 1987, the
Social Security Administration began automatically issuing SSNs to newborns when
the birth was registered by the State, and currently all 50 states, plus Washington
D.C. and Puerto Rico, participate in this program.[cxcix] Once intended to track
individuals accounts within the Social Security Program, SSNs have become a
universal identifier for individuals within the U.S. The U.S. Constitution expressly
states that an enumeration shall be made within three Years after the first Meeting
of the Congress of the United States, and within every subsequent Term of ten Years
in such Manner as they shall by Law direct.[cc] Census records are a constitutional
and there is no consistency regarding who may access DNA databases and for what
reasons. DNA is a useful crime-fighting tool, but its potential makes it likely to be
abused. Because DNA databases already exist, it is hard to imagine that their
viability will diminish in the future. Therefore, leaders must work to ensure that all
DNA profiles and DNA samples are used for the limited purpose for which they were
collected, and advocates should push for the eventual destruction of all DNA
samples once DNA profiles have been generated so that no one will be tempted to
use them for purposes that go beyond forensic identification. The way cold hit
statistics are used to determine guilt or innocence in litigation is another area of
potential abuse. Increasingly, convictions are relying on DNA evidence alone.
Moreover, when the DNA evidence is a partial match on less than 13 loci, the risk of
injustice is greater, as evidenced by the report of Arizonas DNA database in 2005. It
is frightening that most people are blinded by a belief that DNA is the panacea of
crime detection and do not recognize the potential threat to privacy and other civil
liberties. Researchers should be provided with access to the genetic profiles within
CODIS after all of the personal identifiers have been removed so that they can
conduct independent scientific scrutiny to ensure the scientific integrity of DNA
forensic science. The NDNAD in the UK is even more controversial than the DNA
databases in the U.S. Despite negative media coverage and successful legal
challenges to DNA collection and retention practices, British leaders are forging
ahead with the hope of one day expanding the database to cover the entire UK
population. Given the history of eugenics and discrimination in the U.S. and abroad
and the atrocities that have befallen millions of innocent human beings, everyone
should be aware of and fear the dangers associated with becoming a genetic
surveillance society. If people are not vocal in opposing current DNA database
practices, the only people who will be shaping the future of how DNA is used are
those with a political agenda who are not as concerned with individual privacy and
the ethics of their actions. As science and technology continue to advance, visions
of a brave new world that are the substance of science fiction movies like GATTACA
may no longer be a distant reality.
between protecting individual privacy and keeping the streets safe seems to fall in
favor of more law enforcement. DNA profiling is a far more precise and objective
method of identifying suspects compared to less sophisticated law enforcement
techniques, such as eyewitness identification or smudge fingerprints found at a
crime scene.o Far from feeling threatened by this gigantic storehouse of genetic
data, many Americans see it as a surefire way of catching criminals and ensuring
that only guilty people are convicted of crimes.61 Storing an innocent person's DNA
seems a small price for such a great public good. The countless cases where DNA
data banking either yielded no benefit or produced erroneous identifications
received little attention from the media. Moreover, the public does not hear from
the thousands of innocent people whose DNA was seized and stored against their
will. Although DNA testing has shed light on the injustice of false convictions, it
cannot solve the underlying problems that lead innocent people to be convicted in
the first place. Most wrongful convictions result from deep biases in the criminal
justice system that make poor, minority defendants vulnerable to police abuse,
misidentification, and inadequate representation. 62 False confessions coerced by
the police are one of the main causes of wrongful convictions. According to the
Innocence Project, "In about [twenty-five] percent of DNA exoneration cases,
innocent defendants made incriminating statements, delivered outright confessions
or pled guilty."64 Coerced false confessions were a factor in fifteen of thirty-three
exonerations won by the Center on Wrongful Convictions.65 It makes no sense to
correct a problem created by law enforcement's abuse of power by handing over
even more authority to law enforcement in the form of DNA collection. The way to
reduce wrongful convictions is to remove the biases based on race and class that
corrupt our criminal justice system. Extending the reach of state surveillance does
just the opposite. Besides, contrary to the public's belief that DNA evidence is
infallible, there have been numerous cases of errors in the handling and analysis of
DNA that have led to false accusations and convictions of innocent people.6 6 These
weaknesses in the state's use of DNA data banking as a tool for reducing crime
make it harder to justify the resulting breach of individual privacy. Society
recognizes that the government violates its civil liberties if it taps our telephones or
secretly searches our homes without court permission. 7 Collecting and storing our
DNA is also a serious intrusion into our private lives because DNA is a part of the
body; taking it without consent violates our bodily integrity. In addition to this
material aspect, DNA contains sensitive personal information that can be used to
identify our family members and us, can be matched with other private records,
including medical files. 8 Society tolerates the state forcibly extracting highly
personal data from people convicted of serious crimes because these offenders
have a diminished right to privacy as a result of their antisocial conduct. 9 But as
the categories of people who are compelled to submit DNA broaden, it becomes less
clear why the state should have so much power over them. Once compelled DNA
collection goes beyond murderers, rapists, and armed robbers, law enforcement's
need for a sus- pect's DNA lessens and the right to retain control over their private
information strengthens.70 Although people convicted of heinous crimes may forfeit
their claim to privacy, there is no such justification for seizing genetic samples from
someone who has, say, forged a check. State agents should be required to obtain
informed consent to take or test DNA from anyone who has not been convicted of a
serious crime. Although U.S. courts have been slow to recognize this threat to civil
liberties," in 2008, the European Court of Human Rights unanimously held that the
United Kingdom's storage of DNA for purposes of criminal investigation infringed
privacy rights protected by Article 8 of the European Convention.72 The European
Court was especially troubled by the indefinite retention of genetic information
taken from children and adults who were never convicted of a crime,73 stigmatizing
them as if they were convicted criminals. This equation of the innocent and the
guilty disregards the presumption of innocence accorded to citizens in a democracy.
Massive government collection of DNA transforms the relationship between citizens
and their government in ways that contradict basic democratic principles.74
Government becomes the watchdog of citizens instead of the other way around.
Although they are guilty of no wrongdoing, huge segments of the population are
perpetually under suspicion. Citizens can no longer rely on the state to safeguard
their privacy by forgetting their past behavior because evidence about them is
stored forever. The state has the authority to take citizens' private property-in this
case, their genetic information-without due process. 76 Those are features of a
totalitarian state, not a liberal democracy. III. JIM CROW DATABASES These privacy
violations are exacerbated by the racial inequities that plague every part of the U.S.
criminal justice system. The most stunning aspect of this injustice is the mass
incarceration of African American men." Radical changes in crime control, drug, and
sentencing policies over the last thirty years produced an explosion in the U.S.
prison population from three hundred thousand to two million inmates."
Additionally, the United States has the highest rate of incarceration in the world at a
magnitude unprecedented in the history of Western democracies.79 The gap
between black and white incarceration rates has increased along with rising inmate
numbers.o Black men are eight times as likely as white men to be behind bars.8 '
One in nine black men aged twenty to thirty-four is in prison or in jail.82 In fact,
most people sentenced to prison today are black. In her 2010 book, The New Jim
Crow, legal scholar Michelle Alexander demonstrates that black incarceration
functions like a modern-day Jim Crow caste system because it "permanently locks a
huge percentage of the African American community out of the mainstream society
and economy," replicating the subjugated status of blacks that prevailed before the
civil rights revolution.8 4 The targeted imprisonment of black men is translated into
the disproportionate storage of their genetic profiles in state and federal databases.
We can look to the United Kingdom to gauge the likely racial impact of our own
federal database now that it has surpassed theirs in size. Their database reveals
that 40% of all black men and 77% of black men aged fifteen to thirty-five,
compared with only 6% of white men, were estimated to have genetic profiles in the
UK national DNA database in 2006.8 Also in 2006, Stanford bioethicist Hank Greely
estimated that at least 40% of the genetic profiles in the U.S. federal database were
from African Americans, although they make up only 13% of the national
population. 86 Sheldon Krimsky and Tania Simoncelli arrive at a similar estimate in
which 41 % to 49% of CODIS profiles are from African Americans." The extension of
DNA collection by the federal government and a number of states to people who are
only arrested-as opposed to charged or convicted-brings many more whites into the
system, but it is also on its way to creating a nearly universal database for urban
black men.88 These men are arrested so routinely that upwards of 90% would be
amounts of marijuana, usually carried in their pockets." o' In 2008 alone, the NYPD
arrested and jailed 40,300 people for the infraction."f0 Even more alarming is the
extreme racial bias shown in whom the police target for arrest. Although U.S.
government studies consistently show that young whites smoke marijuana at the
highest rates, white New Yorkers are the least likely of any group to be arrested."1 '
In 2008, whites made up over 35% of the city's population but less than 10% of the
people arrested for marijuana possession. 112 Instead, the NYPD has concentrated
arrests on young blacks and Latinos. Police arrested blacks and Latinos for
marijuana possession at seven and four times the rate of whites, respectively."13
The racist marijuana policing strategy is based on the routine police practice of
stopping, frisking, and intimidating young blacks and Latinos. According to Harry
Levine, the City University of New York sociologist who exposed the arrest
campaign, "In 2008, the NYPD made more than half a million recorded stop and
frisks and an unknown number of unrecorded stops, disproportionately in black,
Latino and low-income neighborhoods."1 14 Although New York City is the
"marijuana arrest capital of the world," other cities like Atlanta, Baltimore, Denver,
Houston, Los Angeles, Philadelphia, and Phoenix are also arresting and jailing huge
numbers of blacks and Latinos for marijuana possession.1 1 5 The widespread
arrests of young blacks and Latinos for marijuana possession and other petty
offenses, such as truancy, skateboarding, and playing loud music, have devastating
consequences. A first-time offender who pleads guilty to felony marijuana
possession has a permanent criminal record that can block him or her from getting
a student loan, a job, a professional license, food stamps, welfare benefits, or public
housing.' Even if they avoid prison on a first offense, those who are arrested a
second time risk a harsh sentence for being a repeat offender."17 In addition to
harsh sentencing, a lifetime of genetic surveillance can now be added to the long
list of collateral consequences created by discriminatory arrests. IV. RACIAL HARMS
Racial disparities in DNA databanks make communities of color the most vulnerable
to state surveillance and suspicion."' The disproportionate odds faced by blacks and
Latinos of having their DNA extracted and stored will, in turn, intensify the racial
disparities that already exist in the criminal justice system. People whose DNA is in
criminal databases have a greater chance of being matched to crime scene
evidence. While a guilty person may have no right to complain, that is no excuse for
unfairly placing certain racial groups at greater risk of detection. Blacks and Latinos
have greater odds of being ge- netically profiled largely because of discriminatory
police practices.119 Moreover, people whose profiles are entered in DNA databases
become subject to a host of errors that can lead to being falsely accused of a crime.
As the federal government and a growing number of states extend the scope of DNA
collection to innocent people, they are imposing this unmerited risk primarily on
minorities. The problem is not only that all of these harms are placed
disproportionately on people of color, but also that the dangers of state databanks
are multiplied when applied to blacks and Latinos because these groups are already
at a disadvantage when they encounter the criminal justice system. Blacks and
Latinos have fewer resources than whites to challenge abuses and mistakes by law
enforcement officers and forensic analysts.120 They are stereotyped as criminals
before any DNA evidence is produced, making them more vulnerable to the myth of
DNA infallibility.121 "The experience of being mistaken for a criminal is almost a rite
of passage for African-American men," writes journalist Brent Staples.122 One of the
main tests applied by a disturbing number of Americans to distinguish law-abiding
from lawless people is their race. Many, if not most, Americans believe that black
people are prone to violence and make race-based assessments of the danger
posed by strangers they encounter. 23 One of the most telling reflections of the
presumption of black criminality is biased reporting of crime by white victims and
eyewitnesses.124 Psychological studies show a substantially greater rate of error in
cross-racial identifications when the witness is white and the suspect is black. 25
White witnesses disproportionately misidentify blacks because they expect to see
black criminals.126 According to Cornell legal scholar Sheri Lynn Johnson, "This
expectation is so strong that whites may observe an interracial scene in which a
white person is the aggressor, yet remember the black person as the
aggressor."127 In numerous carefully staged experiments, social psychologists have
documented how people's quick judgments about the criminal acts of others are
influenced by implicit bias-positive or negative preferences for a social category,
such as race or gender, based on unconscious stereotypes and attitudes that people
do not even realize they hold.' 28 Whites who are trying to figure out a blurred
object on a computer screen can identify it as a weapon faster after they are
exposed to a black face.129 Exposure to a white face has the opposite effect.130
Research participants playing a video game that simulates encounters with armed
and unarmed targets react faster and are more likely to shoot when the target is
black.' The implicit association between blacks and crime is so powerful that it
supersedes reality; it predisposes whites to see black people as criminals. Most
wrongful convictions occurred after witnesses misidentified the defendant.132
Databanks filled with DNA extracted from guilty and innocent black men alike will
enforce and magnify the very stereotypes of black criminality that lead to so many
wrongful convictions in the first place. Collecting DNA from huge numbers of African
Americans who are merely arrested, with no proof of wrongdoing, embeds the
sordid myth of black criminality into state policy. As databanks swell with DNA from
black people who are arrested or convicted on petty offenses and as their relatives
also come under suspicion in states with familial searching, the government
effectively treats every black person in many communities as a criminal suspect. It
seemingly also legitimizes the myth that blacks have a genetic propensity to
commit crime. In 2010, Florida State University criminologist Kevin Beaver
published a widely reported study claiming to show that young men with the lowactivity form of the monoamine oxidase A ("MAOA") gene-dubbed by the press as
the "warrior gene"-were more likely to join gangs than those who had the highactivity version of the MAOA gene.'33 He concluded that "male carriers of low MAOA
activity alleles are at risk for becoming a gang member and, once a gang member,
are at risk for using weapons in a fight."' 34 The public, who already implicitly
associates blacks with violence, may link research claiming that genes cause
gangbanging and aggression to the disproportionate incarceration of African
Americans along with the disproportionate banking of African Americans' genetic
profiles, to reach the false conclusion that blacks are more likely to possess these
crimeproducing traits-or even that most blacks actually possess them. Americans
will become even more indifferent to racial injustice in law enforcement if they are
convinced that black people belong behind bars because of their genetic
predilection to crime. CONCLUSION Despite the racial harms of DNA data banking,
civil rights advocacy groups have done little to challenge the threat posed by
government genetic surveillance. Their silence stems from a tension surrounding
DNA testing. Although it is serving an unjust criminal justice system, DNA
technology is also responsible for one of the biggest successes in criminal justice
reform. As of 2010, more than half (151 out of 254) post-conviction DNA
exonerations involved African Americans.1' There could not be a better publicrelations campaign for DNA than the compelling stories of falsely imprisoned people
released after DNA testing. As criminologist Simon Cole notes, "At first glance, postconviction DNA exonerations appear to be a powerful example of the use of
technoscience to offset social inequality."' 36 Civil rights organizations that may
have ordinarily opposed the expansion of DNA databanks because of their intrusion
into communities of color instead embrace DNA technology as a result of its ability
to exonerate victims of the system. However, while it appears DNA databanks would
decrease mass incarceration, this Article has argued that DNA databanks are
actually more likely to intensify it and its collateral consequences. Champions for
racial justice who support expanded DNA databanks or are silent about them should
not make the mistake of embracing DNA technology without analyzing its full role in
the criminal justice system.' 7 Although DNA testing can correct injustices when
used narrowly to confirm a suspect's guilt or innocence, the massive genetic
surveillance we are witnessing threatens to reinforce the racial roots of the very
injustices that need to be corrected. Wrongful convictions are a symptom of our Jim
Crow system of criminal justice, which is systematically biased against blacks and
Latinos. 38 Creating a Jim Crow database filled with their genetic profiles only
intensifies this travesty of justice, adding yet another collateral consequence of
criminal injustice and fortifying a dangerous biopolitics of race.
nevertheless
remains true that ones moral conduct only emerges from a choice: one has to want it. It is a choice
among other choices, and always debatable in its foundations and its consequences. Let us say, broadly
speaking, that the choice to conduct oneself morally is the condition for the establishment of a human order for
accident that almost all of humanitys spiritual traditions counsel respect for the weak, for orphans, widows, or
strangers. It is not just a question of theoretical counsel respect for the weak, for orphans, widows or strangers. It is
not just a question of theoretical morality and disinterested commandments. Such unanimity in the safeguarding of
we have an interest in
banishing injustice, because injustice engenders violence and death. Of
the other suggests the real utility of such sentiments. All things considered,
course, this is debatable. There are those who think that if one is strong enough, the assault on and
oppression of others is permissible. But no one is ever sure of remaining the strongest. One day,
respect. Recall, says the bible, that you were once a stranger in Egypt, which means both that you ought to
respect the stranger because you were a stranger yourself and that you risk becoming once again someday. It is
In short,
the refusal of racism is the condition for all theoretical and practical
morality. Because, in the end, the ethical choice commands the political
choice. A just society must be a society accepted by all. If this contractual
principle is not accepted, then only conflict, violence, and destruction will
be our lot. If it is accepted, we can hope someday to live in peace. True, it is a wager, but the
stakes are irresistible.
an ethical and a practical appeal indeed, it is a contract, however implicit it might be.
Historically,
warfare has been the biggest violent killer of humans. According to Steven Pinker, the author of The
Better Angels of Our Nature: Why Violence Has Declined , today is probably the most peaceful time in
human history. By the numbers, he writes, the world was a far more dangerous place
in the 1960s, 70s, and 80s. According to the Uppsala Conflict Data Program, armed conflicts have
declined by almost 40 percent since right after the end of the Cold War. Today, write Micah Zenko
and Michael A. Cohen in Foreign Affairs, wars tend to be low-intensity conflicts that , on average,
kill about 90 percent fewer people than did violent struggles in the 1950s. War between
major nation-states has dwindled to the verge of extinction . In the context of human
evolution, this is an astounding development. Of course, the world remains turbulent, but most of todays
military conflict, as in Syria right now, takes the form of civil war rather than war between
nations, and implicates American interests but not American lives (unless America enters
the fighting). The United States faces no plausible military invader or attacker . All we
are really talking about, when we discuss threats from Iran or North Korea or ISIS, is
whether our margin of safety should be very large or even larger. No great power
in world history comes close to enjoying the traditional state security that the United
States does today, writes Stephanie Rugolo in A Dangerous World? Threat Perception and U.S. National
Security, a new collection of essays from the Cato Institute. Here at home, criminal violence is, as ever, a serious
problem. But its reduction over the past couple of decades is one of the great success stories of our time. The
violent-crime rate (which excludes homicides) has declined by more than 70 percent since the early 1990s. The
homicide rate has declined by half, and in 2011 it reached the lowest level since 1963. According to the National
Crime Victimization Survey, between 1995 and 2010 the rate of rape and sexual assault fell from five per 1,000
females to two. And how do
year Gallup asks whether crime has gone up or down since the previous year. Every year, rain or shine, the public
insists, usually by overwhelming margins (63 percent to 21 percent in 2014), that crime has risen. Most Americans
Unaware of Big Crime Drop Since 1990s, announced the Pew Research Center in 2013; only 10 percent of those
surveyed knew that gun crimes had gone down since the 1990s. Criminologists say that many people get angry
story, Graeme Wood examines this threat, and the appropriate response, in detail.) Pinker, a psychologist at
Harvard, mused in a recent speech about Americans odd refusal to appreciate their security. The bad news for
the world we evolved for, however, humans needed to be hyperalert. Something rustling in the bush was more
president who lectures the public about its insecurities, instead of pandering to its fears, necessarily seems
impolitic, out of touch, tone-deaf, pedantic, negligent, complacentchoose your adjective. For precisely that
reason, we can be grateful his instinct is to underreact. Historians will thank him, even if we dont, for his
steadfastness in the face of unprecedented safety.
Prospects, p. 63-69, The book reflects the author's experience across more than
forty years in assessing and forming policy about nuclear weapons, mostly at senior
levels close to the centre both of British governmental decision-making and of
NATO's development of plans and deployments, with much interaction also with
comparable levels of United States activity in the Pentagon and the State
department, 2009)
There have certainly been, across the decades since 1945, many known accidents
involving nuclear weapons, from transporters skidding off roads to bomber aircraft
crashing with or accidentally dropping the weapons they carried (in past days when
such carriage was a frequent feature of readiness arrangements it no longer is). A
few of these accidents may have released into the nearby environment highly toxic
material. None however has entailed a nuclear detonation. Some commentators
suggest that this reflects bizarrely good fortune amid such massive activity and
deployment over so many years. A more rational deduction from the facts of this
long experience would however be that the probability of any accident triggering a
nuclear explosion is extremely low. It might be further nested that the mechanisms
needed to set of such an explosion are technically demanding, and that in a large
number of ways the past sixty years have seen extensive improvements in safety
arrangements for both the design and the handling of weapons. It is undoubtedly
possible to see respects in which, after the cold war, some of the factors bearing
upon risk may be new or more adverse; but some are now plainly less so. The years
which the world has come through entirely without accidental or unauthorized
detonation have included early decades in which knowledge was sketchier,
precautions were less developed, and weapon designs were less ultra-safe than
they later became, as well as substantial periods in which weapon numbers were
larger, deployments immure widespread arid diverse, movements more frequent,
and several aspects of doctrine and readiness arrangements more tense. Similar
considerations apply to the hypothesis of nuclear war being mistakenly triggered by
false alarm. Critics again point to the fact, as it is understood, of numerous
occasions when initial steps in alert sequences for US nuclear forces were embarked
upon, or at least called for, by indicators mistaken or misconstrued. In none of these
instances, it is accepted, did matters get at all near to nuclear launch
extraordinary good fortune again, critics have suggested. But the rival and more
logical inference from hundreds of events stretching over sixty years of experience
presents itself once more: that the probability of initial misinterpretation leading far
towards mistaken launch is remote. Precisely because any nuclear weapon
processor recognizes the vast gravity of any launch, release sequences have many
steps, and human decision is repeatedly interposed as well as capping the
sequences. To convey that because a first step was prompted the world somehow
came close to accidental nuclear war is wild hyperbole, rather like asserting, when a
tennis champion has lost his opening service game, that he was nearly beaten in
straight sets. History anyway scarcely offers any ready example of major war
started by accident even before the nuclear revolution imposed an order-ofmagnitude increase of caution.
It was occasionally conjectured that nuclear war might be triggered by the real but
accidental or unauthorized launch of a strategic nuclear-weapon delivery system in
the direction of a potential adversary. No such launch is known to have occurred in
over sixty years. The probability of it is therefore very low. But even if it did happen, the
further hypothesis of its initiating a general nuclear exchange is far-fetched. It fails
to consider the real situation of decision-makers , as pages 63-4 have brought out. The notion
that cosmic holocaust might be mistakenly precipitated in this way belongs to
science fiction. One special form of miscalculation appeared sporadically in the
speculations of academic commentators, though it was scarcely ever to be
encounteredat least so far as my own observation wentin the utterances of practical
planners within government. This is the idea that nuclear war might be erroneously triggered, or
erroneously widened, through a state under attack misreading either what sort of attack it was being subjected to,
example, as a criticism of the proposals for giving the US Trident SLBM, long associated with nuclear missions, a
it is
hard to regard this particular apprehension as having any real-life credibility. The
flight time of a ballistic missile would not exceed about thirty minutes, and that of a
cruise missile a few hours, before arrival on target made its characterconventional
or nuclearunmistakable. No government will need, and no non-lunatic government
could wish, to lake within so short a span of time a step as enormous and
irrevocable as the execution of a nuclear strike On the basis of early-warning information alone
without knowing the true nature of the incoming attack. The speculation tends moreover to be
expressed without reference either to any realistic political or conflict-related
context thought to render the episode plausible, or to the manifest interest of the
launching country, should there be any risk of doubt, in ensuringby explicit
communication if necessarythat there was no misinterpretation of its
conventionally armed launch. It may be objected to this analysis that in the cold war the two opposing
capability to deliver conventional warheads. Whatever the merit of those proposals (it is not explored here),
superpowers had concepts of launch-on-warning. That seems to be true, at least in the sense that successive US
administrations declined to rule out such an option and indeed included in their contingency plans both this and the
possibility of launch-under-attack (that is launch after some strikes had been suffered and while the sequence of
them was evidently continuing). The Soviet Union was not likely to have had more relaxed practices. But the
colossal gravity of activating any such arrangements must always have been recognized. It could have been
contemplated only in circumstances where the entire political context made a pre-emptive attack by the adversary
plainly a serious and imminent possibility, and where moreover the available information unmistakably indicated
that a massive assault with hundreds or thousands of missiles was on the way. That was a scenario wholly unlike
The
other sort of misunderstanding conjecturedthat of misread ing the source of attack
that implicit in the supposition that a conventional missile attack might be briefly mistaken for a nuclear one.
envisaged, typically, that SLBMs launched by France or the United Kingdom might erroneously be supposed to be
coming from US submarines, and so might initiate a superpower exchange which the United States did not in fact
intend. (An occasional variant on this was the notion that 'triggering' in this way might actually be an element in
deliberate French or UK deterrent concepts. There was never any truth in this guess in relation to the United
those leaders for their part resorting, on unproven suspicion, to action that was
virtually certain to provoke nuclear counter-action from the United States. There used
occasionally to be another speculation, that if the Soviet Union suffered heavy nuclear strikes known to come from
France or the United Kingdom, it might judge its interests to be best served by ensuring that the United States did
not remain an unscathed bystander.
It is highly unlikely, though details are (again understandably) not made public,
that regular reviews of control arrangements are oblivious to any such risks .
armouries.
Perceptions of them do however reinforce the already-strong case that whatever arrangements still remain in place
for continuous high readiness to launch nuclear action at short notice should be abandoned. Chapter 13 returns to
this.
violence studies that risk publicly humiliating the powerless who are often forced into complicity with social and
individual pathologies of power because suffering is often a solvent of human integrity and dignity. Thus, in this
maim, or soul-murder. We realize that in referring to a violence and a genocide continuum we are flying in the face
of a tradition of genocide studies that argues for the absolute uniqueness of the Jewish Holocaust and for vigilance
with respect to restricted purist use of the term genocide itself (see Kuper 1985; Chaulk 1999; Fein 1990;
is absolutely
necessary to make just such existential leaps in purposefully linking violent acts in
normal times to those of abnormal times. Hence the title of our volume: Violence in War and in
Chorbajian 1999). But we hold an opposing and alternative view that, to the contrary, it
Peace. If (as we concede) there is a moral risk in overextending the concept of genocide into spaces and corners
of everyday life where we might not ordinarily think to find it (and there is), an even greater risk lies in failing to
sensitize ourselves, in misrecognizing protogenocidal practices and sentiments daily enacted as normative behavior
by ordinary good-enough citizens. Peacetime crimes, such as prison construction sold as economic development
to impoverished communities in the mountains and deserts of California, or the evolution of the criminal industrial
complex into the latest peculiar institution for managing race relations in the United States (Waquant, Chapter 39),
constitute the small wars and invisible genocides to which we refer. This applies to African American and Latino
These are
invisible genocides not because they are secreted away or hidden from view, but
quite the opposite. As Wittgenstein observed, the things that are hardest to perceive are
those which are right before our eyes and therefore taken for granted . In this regard,
youth mortality statistics in Oakland, California, Baltimore, Washington DC, and New York City.
Bourdieus partial and unfinished theory of violence (see Chapters 32 and 42) as well as his concept of
misrecognition is crucial to our task. By including the normative everyday forms of violence hidden in the minutiae
of normal social practices - in the architecture of homes, in gender relations, in communal work, in the exchange
of gifts, and so forth - Bourdieu forces us to reconsider the broader meanings and status of violence, especially the
links between the violence of everyday life and explicit political terror and state repression, Similarly, Basaglias
notion of peacetime crimes - crimini di pace - imagines a direct relationship between wartime and peacetime
violence. Peacetime crimes suggests the possibility that war crimes are merely ordinary, everyday crimes of public
consent applied systematic- ally and dramatically in the extreme context of war. Consider the parallel uses of rape
during peacetime and wartime, or the family resemblances between the legalized violence of US immigration and
naturalization border raids on illegal aliens versus the US government- engineered genocide in 1938, known as
the Cherokee Trail of Tears. Peacetime crimes suggests that everyday forms of state violence make a certain kind
of domestic peace possible. Internal stability is purchased with the currency of peacetime crimes, many of which
take the form of professionally applied strangle-holds. Everyday forms of state violence during peacetime make a
certain kind of domestic peace possible. It is an easy-to-identify peacetime crime that is usually maintained as a
public secret by the government and by a scared or apathetic populace. Most subtly, but no less politically or
structurally, the phenomenal growth in the United States of a new military, postindustrial prison industrial complex
has taken place in the absence of broad-based opposition, let alone collective acts of civil disobedience. The public
consensus is based primarily on a new mobilization of an old fear of the mob, the mugger, the rapist, the Black
man, the undeserving poor. How many public executions of mentally deficient prisoners in the United States are
needed to make life feel more secure for the affluent? What can it possibly mean when incarceration becomes the
normative socializing experience for ethnic minority youth in a society, i.e., over 33 percent of young African
(under adverse political or economic conditions), perhaps more easily than we would like to recognize. Under the
violence continuum we include, therefore, all expressions of radical social exclusion, dehumanization, depersonalization, pseudospeciation, and reification which normalize atrocious behavior and violence toward others. A
constant self-mobilization for alarm, a state of constant hyperarousal is, perhaps, a reasonable response to
Benjamins view of late modern history as a chronic state of emergency (Taussig, Chapter 31). We are trying to
recover here the classic anagogic thinking that enabled Erving Goffman, Jules Henry, C. Wright Mills, and Franco
Basaglia among other mid-twentieth-century radically critical thinkers, to perceive the symbolic and structural
relations, i.e., between inmates and patients, between concentration camps, prisons, mental hospitals, nursing
homes, and other total institutions. Making that decisive move to recognize the continuum of violence allows us
to see the capacity and the willingness - if not enthusiasm - of ordinary people, the practical technicians of the
social consensus, to enforce genocidal-like crimes against categories of rubbish people. There is no primary impulse
mass violence and genocide are born, it is ingrained in the common sense
of everyday social life. The mad, the differently abled, the mentally vulnerable have often fallen into this
out of which
category of the unworthy living, as have the very old and infirm, the sick-poor, and, of course, the despised racial,
religious, sexual, and ethnic groups of the moment. Erik Erikson referred to pseudo- speciation as the human
tendency to classify some individuals or social groups as less than fully human - a prerequisite to genocide and one
that is carefully honed during the unremark- able peacetimes that precede the sudden, seemingly unintelligible
technicians of everyday violence in the backlands of Northeast Brazil (Scheper-Hughes, Chapter 33), for example,
include the clinic doctors who prescribe powerful tranquilizers to fretful and frightfully hungry babies, the Catholic
priests who celebrate the death of angel-babies, and the municipal bureaucrats who dispense free baby coffins
but no food to hungry families. Everyday violence encompasses the implicit, legitimate, and routinized forms of
violence inherent in particular social, economic, and political formations. It is close to what Bourdieu (1977, 1996)
means by symbolic violence, the violence that is often nus-recognized for something else, usually something
good. Everyday violence is similar to what Taussig (1989) calls terror as usual. All these terms are meant to reveal
a public secret - the hidden links between violence in war and violence in peace, and between war crimes and
peace-time crimes. Bourdieu (1977) finds domination and violence in the least likely places - in courtship and
marriage, in the exchange of gifts, in systems of classification, in style, art, and culinary taste- the various uses of
culture. Violence, Bourdieu insists, is everywhere in social practice. It is misrecognized because its very
everydayness and its familiarity render it invisible. Lacan identifies rneconnaissance as the prerequisite of the
social. The exploitation of bachelor sons, robbing them of autonomy, independence, and progeny, within the
structures of family farming in the European countryside that Bourdieu escaped is a case in point (Bourdieu,
Chapter 42; see also Scheper-Hughes, 2000b; Favret-Saada, 1989). Following Gramsci, Foucault, Sartre, Arendt,
and other modern theorists of power-vio- lence, Bourdieu treats direct aggression and physical violence as a crude,
uneconomical mode of domination; it is less efficient and, according to Arendt (1969), it is certainly less legitimate.
While power and symbolic domination are not to be equated with violence - and Arendt argues persuasively that
violence is to be understood as a failure of power - violence, as we are presenting it here, is more than simply the
expression of illegitimate physical force against a person or group of persons. Rather, we need to understand
violence as encompassing all forms of controlling processes (Nader 1997b) that assault basic human freedoms
and individual or collective survival. Our task is to recognize these gray zones of violence which are, by definition,
not obvious. Once again, the point of bringing into the discourses on genocide everyday, normative experiences of
reification, depersonalization, institutional confinement, and acceptable death is to help answer the question:
What makes mass violence and genocide possible ? In this volume we are suggesting that mass
violence is part of a continuum, and that it is socially incremental and often experienced by
perpetrators, collaborators, bystanders - and even by victims themselves - as expected,
routine, even justified. The preparations for mass killing can be found in social sentiments and institutions
from the family, to schools, churches, hospitals, and the military. They harbor the early warning
signs (Charney 1991), the priming (as Hinton, ed., 2002 calls it), or the genocidal continuum (as we call
it) that push social consensus toward devaluing certain forms of human life and
lifeways from the refusal of social support and humane care to vulnerable social
parasites (the nursing home elderly, welfare queens, undocumented immigrants, drug addicts) to the
militarization of everyday life (super-maximum-security prisons, capital punishment; the technologies of
heightened personal security, including the house gun and gated communities; and reversed feelings of
victimization).
1AC Plan
The United States Federal Government should apply strict
scrutiny to federally funded public health surveillance
programs.
***Solvency***
model confirm its irrelevance in any search for a federal privacy response to big
datas growing hold on medically inflected data.
pass a law that protects homosexuals from dis-closure of their sexual orientations.
The right to privacy is funda-mentally a minority protection, allowing a sphere of
autonomous de-cision-making and freedom from the fear of the majoritys ridicule
of ones personal choices. To lay the burden of protecting this right at the feet of the
majority suffers from the same problems as asking the majority to decide whether
one might engage in consensual homo-sexual relations or join the communist
party.104 Recognition by the courts that informational privacy is an important right
with constitu-tional dimensions could help ensure that the courts will scrutinize such
infringements, whether affirmatively enacted by the legislature or committed by the
executive in the absence of legislative protec-tions. The idea that so important a
right can exist on so shaky a groundor indeed not exist at allis fundamentally
problematic. In addition, these gaps in legislative protections for the right to privacy
have persisted for a very long time, and it is not altogether clear that the gears are
turning to close them now.105 Even if legisla-tive clarity is preferable to judicial
clarity, one clear answer from the Supreme Court is preferable to twelve vague ones
from the circuits. The current uncertainty has several detrimental effects. First, insofar as there is a correct answer to the question, a circuit split im-plies that one
side or the other is incorrect. Either constitutional rights are being underenforced
in jurisdictions that improperly nar-row the right, or nonexistent rights are being
enforced in jurisdic-tions that improperly broaden it. Second, this assumed, but
unconfirmed, right leaves the lower courts, government actors, and potential
claimants with little guid-ance. As Justice Scalia suggested in his concurrence in
NASA v. Nel-son, this encourages an endless stream of hopeful plaintiffs to flood the
courts with claims that are different on one or another dimension from decided
cases because they have no grounds on which to de-termine whether those
differences are relevant.106 A vague right may therefore result in even more
litigation than a broad but clear one. Another possibility is that, for fear of
prosecution, government agencies will be unwilling to cross a boundary whose
location is un-certain and will be deterred from beneficial policies that approach but
do not step over that boundary.107 The question should be set-tled, one way or the
other, and the Supreme Court may be the only institution that can settle it.
loss, in order to weigh in the balance. Even if public health goals are more
specifically identified, the definition of privacy in ones medical information may
also require more precision in order to achieve meaningful balance. Like public
health, the concept of privacy can be fraught with ambiguity and possibilities for
expansion. Privacy is often understood to mean an individuals right to control
access to information about herself.175 Yet the literature contains ample
acknowledgement that this is hardly sufficient to explain the many, sometimes
contradictory, facets of privacy, much less its exceptions.176 Certainly the Supreme
Court has yet to define the whole of its scope and limits. Even in the absence of
consensus on the overall concept, however, it is still both possible and defensible to
treat personal medical information privacy as a specific aspect of privacy for the
purpose of examining when that information is justifiably subject to involuntary
disclosure and re-disclosure to government. The analysis of the concept of
privacy for purposes of public health surveillance should be limited to information,
from whatever source, about an identifiable individuals health status, medical care,
genetic characteristics, personal behavior, or exposure to health risks. The Supreme
Court has referred to information privacy in part as the individual interest in
avoiding disclosure of personal matters.177 This disclosure can take several
forms. The first and most commonly thought of is disclosure to the public, in the
form of deliberate or negligent publication of personal facts to society at large. This
is the type of injury that impelled Warren and Brandeis to argue for a right to
privacy.178 However, it is probably the least likely harm to individuals whose
information is reported to a public health surveillance program. The second form of
disclosure, and the primary focus of this discussion, is the compulsory revelation or
transmission to a government agency. As emphasized by several judges in the
abortion cases discussed above, this form of disclosure is more accurately
characterized as a possible invasion of privacy, because, metaphorically at least,
the government forces its way into ones personal space to extract information that
a person wishes to keep secret. This form of disclosure/invasion takes place at each
level of surveillance. While concern for deliberate or negligent revelations to the
public at large may exist with respect to any collection of information, including
information voluntarily disclosed, it is likely that the core concern of information
privacy is with invasions of privacy in which the government obtains personal
information without consent.179 The concept of privacy attached to ones personal
information seems to include, at its essence, a sense of autonomy and selfdetermination not just physical control over papers or computer files. Unlike other
forms of property, the information has value because of what it reveals about a
person.180 Personal information is thus an aspect of the human being; it involves
ones identity and dignity.181 Loss of personal information can seem as much a
violation of a persons dignity as a physical invasion of the body. In this respect,
privacy protects ones sense of self. When government has the power to take that
personal knowledge, it invades that sense of self. This may be why the violation of
privacy often provokes feelings of outrage, even when the facts acquired are not
embarrassing. An invasion of privacy violates ones dignity, even if it fails to
produce economic injury. Yet courts have failed to frame this aspect of privacy as a
cognizable cause of action. Even though not everyone would agree on what types of
information would be embarrassing if revealed, the central issue is whether that
individuals from obtaining controlled substances from more than one physician or
using stolen or altered prescriptions, preventing pharmacists from refilling
dangerous prescriptions, and preventing physicians from over-prescribing.133 If
prevention failed, the records would enable investigators to identify and possibly
prosecute those who were breaking the law. Not surprisingly, the Court found that
the goal was reasonable,134 and that the prescription system could reasonably be
expected to have a deterrent effect on potential violators as well as to aid in the
detection or investigation of specific instances of apparent abuse.135 The Court
noted that the reporting requirement was not meaningfully distinguishable from a
host of other unpleasant invasions of privacy that are associated with many facets
of health care,136 comparing it to reporting requirements relating to venereal
disease, child abuse, injuries caused by deadly weapons, and certifications of fetal
death.137
be closed because the law should favor free dissemination of information over
privacy.93 In other words, she believes that society would be a better place if
everyone came out of the closet and had a frank discussion about their lifestyle.
She worries that allowing someone to sue for disclosure of their sexual orientation
officially acknowledges that that status is shameful and embar-rassing.94 Martin
may be right that society would be a better place if everyone came out of the
closet. But to force individuals to disclose their sexual identity for our own
bettermentto force them to sacrifice their privacy and suffer the real if
unfortunate costs that might attend that sacrificemay ask too much. Martin
further argues that closing the gaps left by state tort law and allowing challenges to
potentially unconstitutional lawmaking could produce excessive litigation against
government agents that impede their efficiency.95 The thought that closing the
gaps would produce substantially more cases than have already been dealt with
over the last three decades hardly seems plausible, however. In the majority of
circuits, the courts have accepted some level of protection for informational privacy
rights already and must hear cases on these issues even where those protections
are limited to fundamental rights protected by the decisional line of privacy.96
There may even be less litigation when clear standards deter frivolous suits and a
recognized, defined right reduces the incidence of violation. While such a right may
cause a police officer to pause and consider whether dis-closure of a particular
piece of information collected in his or her investigation implicates a privacy right,
the potential harm to the fact-finding process can be minimized by an appropriately
deferential level of scrutiny, and the mitigating benefits to privacy rights may be
worthwhile.
merely provide Congress with independent authority to allocate resources for the
public good; it also allows Congress to set conditions on the receipt of funds.2 The
need for federal public health funds effectively induces state conformance with
federal regulatory standards. Congress uses conditional spending to induce states
to conform to federal standards in numerous public health contexts, including
Medicaid and Medicare, occupational health, and highway safety. Of all the
provisions bestowing federal public health power, none is more important than
Article 1, 8 of the Constitution, which grants Congress the power to regulate
Commerce . . . among the several States. Practically speaking, the power to
regulate commerce has enabled the national government to invade traditional
realms of state authority including environmental protection, occupational health,
food and drug purity, and safe drinking water. The Courts modern construction of
the power to regulate commerce has been described as plenary or all-embracing,
and has been exerted to affect virtually every aspect of social life.3
and greater justifications may be particularly difficult when the judicial branch has
so little textual support for making such burden-some demands. Those courts that
have accepted a broad right have typically simp-ly cited Whalen and the Supreme
Courts other privacy decisions and announced tests.79 The tests may reflect what
Mary D. Fan refers to as the creepiness emotional meter.80 The gist of this
concept is that there is an intuitive sense that the government should not be able to
demand or divulge private information without good reason.81 Cer-tain actions
taken by government officials or legislatures can and do step beyond the pale, so
there must be some constitutional protec-tions when they do.82 The idea that a sex
tape taken as evidence of extortion could be passed around the precinct for the
viewing pleas-ure of the officers,83 or that humiliating details of a rapedetails that
the victim had not even told her husbandcould be released at a press conference
without public purpose,84 is so viscerally horrifying to the courts that it seems
intuitively impossible that no constitutional right exists to prevent such behavior.85
State reforms can only ever be patchwork --- they dont apply
once the information leaves the physicians possession
Goldman, from the College of Physicians and Surgeons, Columbia University,
November 1998 (Janlori, Protecting Privacy To Improve Health Care, published in
HealthAffairs volume 17 number 6)//roetlin
In the absence of federal health privacy legislation, a number of states have moved to enact such legislation. In the
more than 250 bills with medical privacy provisions were introduced in
the states. More than thirty-two of these bills became law.22 However, there is little consistency to the state
laws in this area. Many states impose on physicians the duty to maintain the
confidentiality of medical records, but such protection may no longer apply after
the records leave the physicians possession (for example, to process a claim).23 State
laws also may only address specific medical conditions, instead of the medical
record as a whole. Virtually every state, for instance, has some form of special protection for communicable
past year alone
diseases.24 States have more recently enacted laws to protect the confidentiality of genetic test results.25 Other
state laws address a specific activity. A recent Minnesota law, for example, requires that a patients consent be
ways.130 In order to ensure that basic privacy protections are uniform in every
state, regulations for justification, access, and disclosure must be added to the
HIPAA public health exception as standardized national criteria in the form of a
single, strong federal law.131 There has been some suggestion that HHS lacked
the authority needed to implement such regulations at the time of drafting the
original Rule.132 Accordingly, Congressional authorization may be necessary before
clearer guidelines for public health agencies could be promulgated. Despite the
virtues of state privacy laws, the public is calling for Congress to take action. The
patchwork system of state privacy laws does not afford comprehensive privacy
protection, and so Congress must provide additional protection through
comprehensive federal legislation.133 State law preemption for privacy regulations
should remain the standard for PHI disclosures. However, the only way to ensure the
privacy of personal medical records in the hands of public health authorities is to
strengthen the existing regulations. Without further standards at the national level,
the individual is left with incomplete and inadequate protections, and public health
officials will continue to encounter reluctance when soliciting PHI.
data without specific informed consent are ethically appropriate and legally
authorized, such as requirements to report infectious diseases to state health
departments and the duty to warn persons at significant risk of harm. The national
privacy standards set a "floor" for protections that, DHHS suggests, "balance[s] the
needs of the individual with the needs of the society."" Reaching this balance,
however, is precarious. In some cases, the common good to be achieved is not
worth the infringement of privacy. In other circumstances, the need for data may be
sufficiently strong to outweigh the individual's claim to autonomy and privacy.
Privacy laws at the federal, state, and local levels are fragmented and
inconsistent, and do not reflect any coherent formula for balancing. In
particular, the national privacy rule does not always achieve a fair and reasonable
allocation of benefits and burdens for patients and the community. We suggest rules
for balancing private and public interests that go beyond the traditional conception
of individual autonomy as a dominating factor. Rather than seeing autonomy as a
"trump card" that always prevails, our framework values both privacy and common
goods, without a priori favoring either. We instead seek to maximize privacy
interests where they matter most to the individual and maximize communal
interests where they are likely to achieve the greatest public good. Thus, where the
potential for public benefit is high and the risk of harm to individuals is low, we
suggest that public entities should have discretion to use data for important public
purposes. Individuals should not be permitted to veto the sharing of personal
information irrespective of the potential benefit to the public. Privacy rules should
not be so arduous and inflexible that they significantly impede, for example, health
services research or surveillance necessary to promote the public's health. Provided
that the data are used only for the public good (e.g., research or public health), and
the potential for harmful disclosures are negligible, there are good reasons for
permitting data sharing. If the data, however, are disclosed in ways that are unlikely
to achieve a strong public benefit, and the personal risks are high, individual
interests in autonomy should prevail. For example, if health care professionals
disclose personal health data to family, friends, neighbors, employers, or insurers,
the public benefits to be achieved may not be worth the cost in personal privacy.
Such disclosures can cause stigma and embarrassment. Disclosure to employers or
insurers (e.g., health, life, or disability) can result in discrimination. These kinds of
unauthorized disclosures can lead to a loss of patient trust in health care
professionals. Individuals may be reluctant to seek medical treatment for
some conditions (e.g., HIV/AIDS, other sexually transmitted conditions, or
genetic diseases) or to disclose important information to health
professionals. 12 Consequently, for these kinds of disclosures where the public
benefits are negligible and individual privacy risks are high, the law should strictly
prohibit the release of information without the patient's consent. The framework for
balancing we offer attempts to maximize individual and communal interests in the
handling of identifiable health data. Acquisition, use, or disclosure of health
information that can lead to harm would be subject to strict privacy protections.
Correspondingly, acquisition, use, or disclosure of health information for important
public purposes would be permitted provided that (1) uses are restricted to the
purposes for which the data are collected, and (2) subsequent disclosures for other
purposes are prohibited without individual authorization. This framework defends
autonomy when individual interests are high and public interests are low. We
recognize that adherence to this balancing test will entail a certain diminution of
autonomy. However, it will be worth the cost in terms of the benefits that everyone
will achieve in living in a society that values the communal goods offered by
research, public health, and other public enterprises.
***Advantages***
often happens at a time and in a place when individuals are in a vulnerable state
at the clinic or in the hospital. Today, state government agencies collect illness,
injury, hospitalization, diagnostic, medication, genetic, birth and death data on
individual citizens. This collection and connection of private medical records data
occurs often without patient consent or knowledgeand sometimes without specific
authority in state law. These state collections of personal information include, but
are not limited to, the following conditions or test results, which may exist in
databases, registries or biobanks. States vary greatly in their collection of data.
Although all states have one or more of the following collections of data, not every
state maintains all of these collections. This private data is not only routinely
collected without patient consent, it is increasingly being linked together
for analysis, research and tracking. For example, as part of its application for a
federal Title V Maternal and Child Block Grant, Kansas reports: Kansas Maternal
and Child Health (MCH) is building data infrastructure, epidemiological capacity, and
products of analysis in order to carry out core public health assessment functions.
We continue to improve Kansas MCH data capacity by: 1) improving data linkages
between birth records and other data sets such as infant death certificates,
Medicaid eligibility and/ or paid claims files, WIC eligibility files, and new born [sic]
metabolic screening files; 2) improving access to hospital discharge data, Youth Risk
Behavior Survey (YRBS) data, Birth Defects Surveillance System (BDSS) data,
Pregnancy Risk Assessment Monitoring System (PRAM) data, and Children and Youth
with Special Health Care Needs (CYSHCN) program data6 Furthermore, the
amount of government health surveillance just keeps growing. The U.S.
Centers for Disease Control and Prevention (CDC) recently created the National
Public Health Surveillance/Biosurveillance Registry for Human Health (NPHSB
Registry), which they describe as, a comprehensive electronic catalog of over 280
CDC public health surveillance and biosurveillance assets related to human health.
Launched in December 2012, the Registry provides information to foster
collaboration among surveillance subject matter experts, and provides critical
information about CDCs surveillance capabilities to decision-makers as they
address a wide range of public health preparedness and response issues that
depend on effective coordination. ... The registry is currently located on CDCs
intranet and available only to members of the CDC community.
care. One emerging question is what role the medical profession and its leaders will
play in shaping future national health care policies that affect decision making
about patient care. Research suggests that for physicians to play a substantial role
in such decision making, there has to be a relatively high level of public trust in the
professions views and leadership. But an examination of U.S. public opinion data
over time and of recent comparative data on public trust in physicians as a group in
29 industrialized countries raises a note of caution about physicians potential role
and influence with the U.S. public. In a project supported by the Robert Wood
Johnson Foundation and the National Institute of Mental Health, we reviewed
historical polling data on public trust in U.S. physicians and medical leaders from
1966 through 2014, as well as a 29-country survey conducted from March 2011
through April 2013 as part of the International Social Survey Programme (ISSP), a
cross-national collaboration among universities and independent research
institutions (ISSP 2011 2013) (see box for poll information). We found that, as has
been previously reported, public trust in the leaders of the U.S. medical profession
has declined sharply over the past half century. In 1966, nearly three fourths (73%)
of Americans said they had great confidence in the leaders of the medical
profession. In 2012, only 34% expressed this view (Harris 19662012). But
simultaneously, trust in physicians integrity has remained high. More than two
thirds of the public (69%) rate the honesty and ethical standards of physicians as a
group as very high or high (Gallup 2013). Our review of numerous analyses of
public-opinion data about public trust in institutions and professions suggests that
the decline in trust is probably attributable to broad cultural changes in the United
States, as well as rising concerns about medical leaders responses to major
national problems affecting the U.S. health care system.1,2 Today, public
confidence in the U.S. health care system is low, with only 23% expressing
a great deal or quite a lot of confidence in the system (Gallup 2014). We
believe that the medical profession and its leaders are seen as a contributing factor.
This phenomenon does not affect physicians in many other countries. Indeed, the
level of public trust in physicians as a group in the United States ranks near the
bottom of trust levels in the 29 industrialized countries surveyed by the ISSP. Yet
closer examination of these comparisons reveals findings similar to those of
previous U.S. surveys: individual patients satisfaction with the medical care they
received during their most recent physician visit does not reflect the decline in
overall trust. Rather, the United States ranks high on this measure of satisfaction.
Indeed, the United States is unique among the surveyed countries in that it ranks
near the bottom in the publics trust in the countrys physicians but near the top in
patients satisfaction with their own medical treatment. The United States is tied for
24th place in terms of the proportion of adults who agree with the statement, All
things considered, doctors in [your country] can be trusted. About 6 in10 U.S.
adults (58%) agree with this statement, as compared with more than three fourths
in Switzerland (83%), Denmark (79%), the Netherlands (78%), and Britain (76%)
(ISSP 20112013) (see table). Part of the difference may be related to the lack of a
universal health care system in the United States. However, the countries near the
top of the international trust rankings and those near the bottom have varied
coverage systems, so the absence of a universal system seems unlikely to be the
dominant factor. By contrast, the United States ranks third in terms of the
proportion of adults who say they were completely or very satisfied with the medical
treatment they received at their last physician visit (56%). Of the 10 countries that
rank lowest in public trust in their countries physicians, all but the United States
also rank 19th or lower in patients satisfaction with their own medical care. The
United States also differs from most other countries in that U.S. adults from lowincome families (defined as families with incomes in the lowest third in each
country, which meant having an annual income of less than $30,000 in the United
States) are significantly less trusting of physicians and less satisfied with their own
medical care than adults not from low-income families. Less than half (47%) of lowincome Americans surveyed agreed that U.S. doctors can be trusted significantly
less than the 63% of nonlow-income Americans who expressed that view. Lowincome Americans were also less likely than nonlow income Americans (48% vs.
59%) to be completely or very satisfied with their treatment at their last physician
visit (ISSP 20112013) (see the Supplementary Appendix, available with the full text
of this article at NEJM.org). Although nonlow-income Americans expressed greater
trust in physicians than their low-income counterparts did, when responses were
analyzed by income group, the United States still ranked 22nd in trust among the
29 countries. On the flip side, although low-income Americans were less likely than
nonlow income Americans to report being completely or very satisfied with their
own care, the United States still ranked seventh in satisfaction among low-income
adults (ISSP 20112013). The same pattern is seen in subpopulations defined by
age or sex. Americans 65 years of age or older were significantly more likely than
younger Americans to agree that U.S. physicians can be trusted (69% vs. 55%), and
U.S. men were significantly more likely than U.S. women to think so (63% vs. 54%).
However, the United States ranked lower in terms of trust in the profession than
most other countries among both men (21st) and people 65 years of age or older
(22nd) (ISSP 20112013). In drawing lessons from these international comparisons,
its important to recognize that the structures in which physicians can influence
health policy vary among countries. We believe that the U.S. political process, with
its extensive media coverage, tends to make physician advocacy seem more
contentious than it seems in many other countries. Moreover, the U.S. medical
profession, unlike many of its counterparts, does not share in the management of
the health system with government officials but instead must exert its influence
from outside government through various private medical organizations. Some
other countries systems have more formal structures through which physician
leaders may bargain and negotiate with the government over such issues as
payment, professional autonomy, and quality of care.3 Moreover, in terms of health
policy recommendations, the U.S. medical profession is split among multiple
specialty organizations, which may endorse competing policies. Nevertheless,
because the United States is such an outlier, with high patient satisfaction and low
overall trust, we believe that the American publics trust in physicians as a group
can be increased if the medical profession and its leaders deliberately take visible
stands favoring policies that would improve the nations health and health care,
even if doing so might be disadvantageous to some physicians. 4,5 In particular,
polls show that Americans see high costs as the most important problem with the
U.S. health care system (RWJF/HSPH 2011), and nearly two thirds of the public
(65%) believes these costs are a very serious problem for the country
(NPR/RWJF/HSPH 2012). To regain public trust, we believe that physician groups will
have to take firm positions on the best way to solve this problem. In addition, to
improve trust among low-income Americans, physician leaders could become more
visibly associated with efforts to improve the health and financial and care
arrangements for low-income people. If the medical profession and its leaders
cannot raise the level of public trust, theyre likely to find that many policy decisions
affecting patient care will be made by others, without consideration of their
perspective.
failed to establish what type of constitutional treatment the courts were to use when
assessing it.58 Unlike the Courts second privacy interest in independence in making certain kinds of important
decisions, which had been fleshed out by several previous Supreme Court decisions59 including Roe v. Wade60
purposes of
. Accordingly,
standard.64
that
has
Amendment
to the govern-ment.65
66 Moreover,
. In general,
have suggested that develop-ments in public health surveillance could or should trigger more rig-orous scrutiny.
Third, the process of confirming a match in CODIS can take up to one month,51 and
this is in addition to the six to 12 months often needed for the actual DNA
processing at CODIS-participating laboratories.52 Fourth, federal regulations require
the removal of profiles from CODIS if a convicted offenders conviction is
overturned, or, in the case of an arrestee, if the charges are dismissed.53 Finally, as
a result of its emphasis on building a database of convicted offenders and arrestees,
the FBIs regulations prohibit the inclusion of DNA profiles from individuals, including
suspects, who provide law enforcement consensual DNA samples.54 Local DNA
databases are not required to comply with any of these federal regulations. For
example, they are free to include consensual DNA samples from people deemed
merely suspicious, victims, victims family members, and witnesses. These
consensual samples have driven the growth of local databases.55 Local DNA
databases are also built with DNA processing from private laboratories.56
Furthermore, local law enforcement is free to set its own protocols for including and
searching partial DNA profiles in their databases and for expunging DNA records.57
29, who was awaiting trial for methamphetamine possession. Inside the Twin Towers
Correctional Facility in Los Angeles last month, Mr. Roberts let a sheriffs deputy
swab the inside of his cheek. Mr. Robertss DNA will be translated into a numerical
sequence at the F.B.I.s DNA database, the largest in the world. The system will
search for matches between Mr. Robertss DNA and other profiles every Monday,
from now into the indeterminate future until one day, perhaps decades hence, Mr.
Roberts might leave a drop of blood or semen at some crime scene. Law
enforcement officials say that DNA extraction upon arrest is no different than
fingerprinting at routine bookings and that states purge profiles after people are
cleared of suspicion. In practice, defense lawyers say this is a laborious process that
often involves a court order. (The F.B.I. says it has never received a request to
purge a profile from its database.) When DNA is taken in error, expunging a
profile can be just as difficult. In Pennsylvania, Ellyn Sapper, a Philadelphia public
defender, has spent weeks trying to expunge the profile taken erroneously of a 14year-old boy guilty of assault and bicycle theft. Im going to have to get a judges
order to make sure that all references to his DNA are gone, she said. The police say
that the potential hazards of genetic surveillance are worth it because it solves
crimes and because DNA is more accurate than other physical evidence. Ive
watched women go from mug-book to mug-book looking for the man who raped
her, said Mitch Morrissey, the Denver district attorney and an advocate for more
expansive DNA sampling. It saves womens lives. Mr. Morrissey pointed to Britain,
which has fewer privacy protections than the United States and has been taking
DNA upon arrest for years. It has a population of 61 million and 4.5 million DNA
profiles. About 8 percent of the people commit about 70 percent of your crimes, so
if you can get the majority of that community, you dont have to do more than
that, he said. In the United States, 8 percent of the population would be roughly 24
million people. Britain may provide a window into Americas genetic surveillance
future: As of March 2008, 857,000 people in the British database, or about one-fifth,
have no current criminal record. In December, the European Court of Human Rights
ruled that Britain violated international law by collecting DNA profiles from innocent
people, including children as young as 10. Critics are also disturbed by the
demographics of DNA databases. Again Britain is instructive. According to a
House of Commons report, 27 percent of black people and 42 percent of
black males are genetically registered, compared with 6 percent of white
people. As in Britain, expanding genetic sampling in the United States could
exacerbate racial disparities in the criminal justice system, according to
Hank Greely, a Stanford University Law School professor who studies the
intersection of genetics, policing and race. Mr. Greely estimated that AfricanAmericans, who are about 12 percent of the national population, make up 40
percent of the DNA profiles in the federal database, reflective of their
prison population. He also expects Latinos, who are about 13 percent of the
population and committed 40 percent of last years federal offenses
nearly half of them immigration crimes to dominate DNA databases.
Enforcement officials contend that DNA is blind to race. Federal profiles include little
more information than the DNA sequence and the referring police agency. Subjects
names are usually kept by investigators. Rock Harmon, a former prosecutor for
Alameda County, Calif., and an adviser to crime laboratories, said DNA
demographics reflected the criminal population. Even if an innocent mans DNA was
included in a genetic database, he said, it would come to nothing without a crime
scene sample to match it. If you havent done anything wrong, you have nothing to
fear, he said.
Nondiscrimination Act of 2008 (GINA)176 and a few other narrow sector-specific statutes like GLBA, most federal
privacy law is quite general in its reach. For example, the Privacy Act of 1974, while applicable to health care data
FTC will leave most health care privacy cases to the HHS Office of Civil Rights although it has asserted its
jurisdiction in cases involving non-HIPAA entities. For example, In the Matter of CBR Systems, Inc., the FTC entered
into a settlement with a provider of umbilical cord blood and umbilical cord tissue-banking services. The proceeding
related to the theft of unencrypted computer drives exposing the health information of almost 300,000 of the
1999 hearings on GLBA. When it became apparent that health insurers would be covered by the proposed
legislation a provision was added with the intent to protect health data. However, that provision would have had the
unintended consequence of opening up health data to broad opt-out sharing among financial institutions with
provision was dropped from the final bill. The APAs Dr. Richard Harding argued before the House of
Representatives, [i]t is critically important to recognize the difference between medical records privacy and
financial privacy, so making the case for health privacy exceptionalism: [T]he damages from breaches of medical
friendships, and even our marriages. And if such disclosures occur, there are truly few
meaningful remedies. Seeking redress will simply lead to further
dissemination of the highly private information that the patient wished to
keep secret . . . . Just a few months later this model of health privacy exceptionalism was confirmed when
President Clinton introduced the first version of the HIPAA privacy rule. 185 The rhetoric of exceptionalism was
clear. As the President noted, the purpose of the regulation was to protect the sanctity of medical records, and it
represented an unprecedented step toward putting Americans back in control of their own medical records.
Rapid Change, which calls for privacy by design and best privacy practices, expresses its sensitivity to burdens
introduced by overlapping or duplicative requirements on conduct that is already regulated but more positively
suggests the potential for the FIPPs framework to provide an important baseline for entities that are not subject to
calculation method used, the cost of sequencing the first human genome was
somewhere around $300 million (see: http://www.genome.gov/10002192); today, it
is less than $8,000 (see: http://www.genome.gov/sequencingcosts), and prospects
for the $1,000 genome and even cheaper genomes are within sight [4]. Data from
genome-wide association studies (GWAS), from whole genome and whole exome
scans, and from other high-throughput technologies are proliferating [5, 6].
Although the ethical challenges associated with the management of information
have always been present in the field, the greater comprehensiveness and
informativeness of todays genomic data now makes these challenges even greater,
as was recently recognized in a report by the Presidential Commission for the Study
of Bioethical Issues [7]. First, unlike targeted genetic data of 2030 years ago, or
even the more comprehensive (but often not very informative) SNP data of 10 years
ago, the whole exome and whole genome sequence data now being generated
will eventually be able to reveal many of a persons specific health risks even if the data emerge from research or diagnosis related to a specific condition
[8]. The growing informational richness of genomic data not only facilitates the
range of questions it can be mined to help answer, but magnifies its potential for
misuse. Second, because of its comprehensiveness, genomic information even
when stripped of traditional identifiers has, at least in some sense, the potential to
re-identify the individual from whom it was obtained [8]. This characteristic, coupled
with the datas overall richness, amplifies concerns about who should be able to
have and control -access to it. Until recently, it was thought that re-identifying a
sample or data from which traditional identifiers had been removed required a
reference sample or data from the same person available for comparison [9],
However, we now know that it is possible, in some cases, to identify the source of a
sample or data by consulting genetic genealogy databases (readily available on the
Internet) that link Y chromosome short tandem repeat (STR) data to particular
surnames, and then combining that information with other publicly available data
(e.g., information about age, state of residence, or facts contained in obituaries)
[10]. Although the actual extent of this previously under-appreciated risk is still
unknown, the risk will almost certainly grow in the future, as more people are
sequenced and as the genetic genealogy industry grows. Indeed, the Advance
Notice of Proposed Rulemaking (ANPRN), a pending set of revisions to the Common
Rule (the regulations that apply to all U.S. federally funded research conducted with
human subjects) explicitly recognizes the potential for re-identification inherent in
all genomic data (see: http://www.gpo.gov/fdsys/pkg/FR-2011-07-26/html/201118792.htm). Finally, the complexity and frequently uncertain meaning of the
information being generated today through whole genome analyses, compared to
the more limited (and thus often more easily interpreted) information typically
derived through earlier, more targeted genetic tests, enhances the possibility that
the information, if shared, will be misunderstood [8]. This is creating new challenges
for researchers and clinicians, who must increasingly decide which, if any, individual
findings they should offer to return to those whose samples they have analyzed [11,
12]. Incidental findings (findings unrelated to the disorder that initially motivated
the research or testing) are inevitable not merely possible - in GWAS and in whole
genome and whole exome scans, and as will be discussed later, these present
particular challenges [8, 1316]. Although concerns about the ethical management
of research and clinical data are by no means new to the field, the transition over
the past 20 years from a narrowly genetic orientation to todays much more
comprehensive genomic one has been accompanied by shifts in the way the
information is being conceptualized and managed. It is thus useful to step back and
review systematically the events that have steered the course of these
developments and the new challenges emerging as a result.
some, with optimism that it would put to rest public worries about possible
misuses of genomic information, thus making protocols that relied on the use of
shared data or incorporated plans for broad data sharing more ethically acceptable
[30]. The second was the issuance by the Office of Human Research Protections
(OHRP) of guidance reaffirming a previously-stated position that research using only
de-identified materials falls outside the definition of human subjects research and
thus outside the protections outlined in the Common Rule (see
http://www.hhs.gov/ohrp/policy/cdebiol.html). This guidance provided some (again,
at least temporary) reassurance to IRBs that protocols involving the use of deidentified, archived samples or data, without re-consent, rested on firm ethical (or,
at least regulatory) footing. It also bolstered the confidence of institutional officials
charged with certifying the appropriateness of the data generated by investigators
at their institutions for deposition into dbGaP. The trend toward broader sharing of
data has been accompanied by a trend toward broader sharing of samples, often
through large biorepositories [31]. The new sequencing technologies make it
possible to conduct genomic studies with much smaller quantities of material,
increasing researchers willingness to share more of the valuable sample resources
they have acquired.
Thus, local databases are not a completely new surveillance tool. This incremental
evolution of law enforcement investigative databases in general, and DNA
databases in particular, will help to solidify local databases as a tolerated, if not
accepted, law enforcement tool.165
Robert Blendon, a professor of health policy and political analysis at the Harvard School of Public Health in Boston and co-author of the new report. While physician leaders elsewhere
in the world often take public stands on key health and medical issues, Americans perceive the medical profession as looking out for itself, not advocating for public health, he said. Just
, according to the report. And a survey of people in 29 countries found the United States
ranked 24th in public trust of doctors. Just 58 percent of Americans surveyed said they "strongly agreed" or "agreed" with the statement that "doctors in your country can be trusted," versus 83 percent of people who said the same
in top-ranked Switzerland, and 79 percent in runner-up Denmark. Only Chileans, Bulgarians, Russians and Poles were less trusting of the medical profession, according to the report, which is published in the Oct. 23 issue of the New
broad public
Science. "In the U.S., they're seen more as a group concerned with their own professional problems and economic issues."
Second World War who, with their families, would often develop lifelong
attachments to the same family doctor. The whole persona of the 'family doctor',
the elderly pipe-puffing figure present both at birth and death, is now
disappearing, both in fact and in the minds of patients. In the United States in
1988, only slightly more than one doctor in ten was in 'general family practice'.26
Nor were American patients particularly interested in the advice of their
physicians: the percentage of patients willing to use the family doctor as a source
of 'local health care information' declined from 46 per cent in 1984 to 21 per cent
in 1989.27 How did families select which hospital to attend? More than 50 per cent
of patients polled in 1989 said that 'they or their family have the most influence
in selection of a hospital' as opposed to listening to the doctor up from 40 per
cent in previous years." (Non-American readers will recall that private American
hospitals compete for patients.) This alienation from the doctorpatient
relationship has diminished the public's former hero-worship of the doctor.
According to a Gallup poll in 1989, 26 per cent of patients said they respected
doctors less now than ten years ago (14 per cent said more). And of those who
respected doctors less, 26 per cent said, 'they (the doctors) are in it for the
money'. Seventeen per cent claimed that doctors 'lack rapport and concern'.29
Research suggests that for physicians to play a substantial role in such decision
making, there has to be a relatively high level of public trust in the professions
views and leadership. But an examination of U.S. public-opinion data over time and
of recent comparative data on public trust in physicians as a group in 29 industrialized countries raises a
note of caution about physicians potential role and influence with the U.S. public .
In a project supported by the Robert Wood Johnson Foundation and the National
Institute of Mental Health, we reviewed historical polling data on public trust in U.S.
physicians and medical leaders from 1966 through 2014, as well as a 29-country
survey conducted from March 2011 through April 2013 as part of the International Social Survey Programme (ISSP), a cross-national
collaboration among universities and independent research institutions . In 1966,
nearly three fourths (73%) of Americans said they had great confidence in the leaders of the
medical profession. In 2012, only 34% expressed this view. But simultaneously, trust in physicians
integrity has remained high. More than two thirds of the public (69%) rate the honesty and ethical standards of physicians as a group as very high or
public confidence in the U.S. health care system is low, with only
23% expressing a great deal or quite a lot of confidence in the system . We believe that the
medical profession and its leaders are seen as a contributing factor.
high (Gallup 2013). Today,
Sam P.K. Collins is a health reporter for ThinkProgress, OCTOBER 23, 2014, Think
Progress, Americans Dont Trust The Medical Profession
http://thinkprogress.org/health/2014/10/23/3583625/americans-skeptical-doctors/
Americans count among the least trusting of the medical profession, according to an
international health care survey. The findings, which appeared in a recent issue of
the New England Journal of Medicine, show significant levels of suspicion of doctors,
especially among those who make less than $30,000 annually. Researchers
studied public health polls dating back four decades, including one
conducted by a consortium of universities between 2011 and 2013 during which
people in 29 countries answered survey questions. In that poll, 58 percent of
Americans said they trust the medical profession, placing the United States in
24th place with Croatia. It fits with decades of data on the American publics
trust in institutions, in general, Michael Gusmano, a scholar at the Hastings Center,
a Garrison, N.Y.-based research institute that focuses on health care, told WebMD.
depending on the topic. While many consumers may freely share certain health information for clinical research, on social media,
and with disease-specific websites, they fiercely protect other personal health data. As we strive to gather more data to advance
the tension between the need for individual privacy and knowledge for the
greater good is only going to increase. The industry has a communication challenge. Do your own survey and
health care,
ask some friends, What are the risks of having your medical information stored electronically? Once they have talked your ear off
heavily in EHRs and health information exchange, we have done little to educate the public whose data may be at risk.
HIV patients are less likely to approve sharing of their health information. Third,
many patients who agree to information sharing among physicians reject the notion
of releasing information to third parties, including employers and family members.
Lastly, the majority of patients who have undergone genetic testing believe that
patients should bear the responsibility of revealing test results to other at-risk
family members. This extensive body of research has primarily focused on the use of identifiable
or potentially identifiable information by others outside of immediate health providers, such as employers,
families and third parties (Sankar et al., 2003). However, very limited research has examined patients perceptions
concerns. On the other hand, in a mail-based survey with adult patients in England, Campbell et al. (2007) found
that about 2835% of patients are neutral to their health information such as age, gender, ethnicity, reason for
treatment, medical history, personal habits impacting health, type of treatment obtained, side effects of treatment
being used by physicians for other purpose. Only about 521% of patients, however, expected to be asked for
permission to use their information by their physicians. Similarly, only about 10% of the patients expected to be
asked for permission if their doctors used their health information for a wide variety of purposes, including
combining data with other patients data to provide better information to future patients, sharing treatment
outcomes with other physicians, teaching medical professionals and writing research articles about diseases and
treatments.
Patients trust has a particularly delicate notion, as patients who are ill and may
have to face high risks regarding their health find themselves in an extremely
vulnerable situation. Reliance on patients individual physicians and the healthcare
system is often inevitable [6,8]. The patient-physician relationship is characterized by a knowledge and
power imbalance in which patients depend on the physicians expertise and execution of treatments to solve their
health problems [6,8,9]. Hence, trust in physician plays an important role and has been studied extensively. Trust in
physician can be defined as the patients optimistic acceptance of a vulnerable situation and the belief that the
health improvement [13] and patients self-reported ability to manage their chronic
disease [14]. As the body of work increases, the question of how to measure trust in physician gains importance.
The validity of empirical findings is fundamentally dependent on the quality of the measures in use. Therefore, the
selection of a measure should be carefully considered and based on the measures psychometric properties. Some
studies addressed the quality of trust in physician measures [5,7,15], but no systematic review on trust in physician
measures and their psychometric properties has been published to date. A thorough overview and comparison of
different validated measures is needed a) to facilitate the choice of an appropriate instrument in accordance with
the individual research purpose, b) to identify research gaps and needs for further psychometric testing of
instruments and c) to inspire new measurement developments, if necessary. Thus, the aims of this systematic
review of measures on trust in the physician are 1) to identify existing psychometrically tested measures of trust in
physician, 2) to determine the methodological quality of the studies that report on psychometric properties of
measures, and 3) to evaluate the quality of identified measures based on their psychometric properties.
A patients medical records are also shared with payer organisations (e.g., private insurance or Medicare/Medicaid)
to justify payment of services rendered. Healthcare providers also use records to manage their operations and
improve service quality. Furthermore, providers may share health information through Regional Health Information
Organisations (RHIOs) to facilitate care services.
doctor-patient trust suggests that a patients health or recovery depend in part on the doctor-patient relationship.
Judith Hall, a researcher at Northeastern University, wrote with colleague Debra Roter, Once the patient and
physician are brought together, they enter a relationship predicated on the expectations each olds for the conduct
of the other. The relationship thus formed has substantial implications for how the curing and caring process will be
accomplished and the extent to which needs and expectations will be met, satisfaction achieved, and health
restored. (Doctors Talking with Patients/Patients Talking with Doctors) Trust has many components. It is based
partly on compatible communication styles. The Journal of General Internal Medicine points to the patients
assessment of the physicians communication, level of interpersonal treatment, and knowledge of the patient. In
these times of short visits, short-tempered doctors and patients, and fragmented treatment, all those factors are in
jeopardy. Patient dissatisfaction implies poor trust. Race and gender of both patient and doctor has an impact.
Patients who genuinely like their doctors tend to trust them more. In the 1950s it was thought that the basis of
physician trust is the understanding that doctors treat everyone equally. The media has made sure we all know this
is not true, and this has to do with economics and geography as well as regional differences in standard of care.
That old-fashioned trust of the physician resulted in a paternalistic approach to medicine with the resulting backlash
by the autonomy movement. The basic function of the doctor, to diagnose and treat, has been called into question
by the Mayo Clinic article as well as a number of other stories such as over-prescribing, doctors taking money from
drug companies, the guy who performed illegal and unsanitary abortions, doctors turning down medicaid patients,
Doctors trust patients less too. Part of the reason doctors dont follow the latest
recommendations is fear of litigation, especially if they dont do something.
etc.
free flow of health information and make less information available for out- comes analysis, research,
and other public health activities.2 Ultimately, however, the converse is true: Without trust
that the personal, sensitive information that they share with their doctors will be
handled with some degree of confidentiality, patients will not fully participate in their
own health care. In the absence of such trust, patients will be reluctant to accurately
and honestly disclose personal information, or they may avoid seeking care
altogether for fear of suffering negative consequences, such as embarrassment,
stigma, and discrimination.
and more proactive in involving patients in their own health care. Patients agreed
they trusted their doctors more when extra time was spent explaining a procedure
and treatment. These patients were more likely to get regular checkups and medical
tests and take their medications properly. They were also more likely to follow a
healthy lifestyle, including diet and exercise, and control diseases such as blood
pressure and diabetes. Trusting your physician plays a much larger role than you
might imagine when making medically informed decisions. Dr. Janet Townsend,
founding chairwoman of the department of family, community and rural health at
the Commonwealth Medical College, believes that establishing a foundation of trust
with patients and their loved ones is the basis for delivering quality health care.
"People need to trust you as a doctor and know that you are truly here for them,"
she said. Dr. Townsend's experiences have taught her that there is no simple
equation for establishing trust, but it is a powerful tool for improving patient
outcomes. Dr. Mark White, an educator and community health researcher at TCMC,
takes great pride in his Physician and Society course for first-year medical students.
He believes that trust is an integral part of the doctor-patient relationship; it is the
root of passionate, patient-centered medicine, something he emphasizes in his
curriculum. In fact, doctor-patient relationships may be improving. A recent MSNBC
report presented a compelling argument that the traditional "authoritative attitude"
of some doctors with their patients is rapidly becoming a thing of the past. More and
more patients are taking responsibility for their health education, and trust may be
the key underlying factor that allows this open communication and better patient
treatment. Today's doctor-patient relationship is one in which both parties are more
equal than ever, which allows both to be rewarded for establishing lasting
relationships built on trust. New partnership In Northeast Pennsylvania, our
communities are grounded in trust. On a regular basis, senior citizens come to my
office for a consultation, and the first question they ask me is, "Who is your father,
Paul?" This is followed by, "Was Al your uncle?" "Are you related to Mike?" While I
was not sure of the importance of these questions early in my career, I have come
to realize that patients were just trying to make a connection with me. They wanted
to know if they could "trust" me. Nick Russo, a recent graduate of the
Commonwealth Medical College's Master of Biomedical Sciences program, presents
new research that supports their instincts: Patients who trust their health care
provider have better outcomes; the doctor-patient relationship matters.
robust science of the doctorpatient encounter and relationship can guide decision
making in health care plans. We know much about the average doctor's skills and
knowledge in this area, and how to teach doctors to relate more effectively and
efficiently.11, 12 We will first review data about the importance of the doctor
patient relationship and the medical encounter, then discuss moral features. We
describe problems that exist and are said to exist, we promulgate principles for
safeguarding what is good and improving that which requires remediation, and we
finish with a brief discussion of practical ways that the doctorpatient relationship
can be enhanced in managed care. The medical interview is the major medium of
health care. Most of the medical encounter is spent in discussion between
practitioner and patient. The interview has three functions and 14 structural
elements (Table 1).13 The three functions are gathering information, developing and
maintaining a therapeutic relationship, and communicating information.14 These
three functions inextricably interact. For example, a patient who does not trust or
like the practitioner will not disclose complete information efficiently. A patient who
is anxious will not comprehend information clearly. The relationship therefore
directly determines the quality and completeness of information elicited and
understood. It is the major influence on practitioner and patient satisfaction and
thereby contributes to practice maintenance and prevention of practitioner burnout
and turnover, and is the major determinant of compliance.15 Increasing data
suggest that patients activated in the medical encounter to ask questions and to
participate in their care do better biologically, in quality of life, and have higher
satisfaction.16 Effective use of the structural elements of the interview also affect
the therapeutic relationship and important outcomes such as biological and
psychosocial quality of life, compliance, and satisfaction. Effective use gives
patients a sense that they have been heard and allowed to express their major
concerns,17 as well as respect,18 caring,19 empathy, self-disclosure, positive
regard, congruence, and understanding,20 and allows patients to express and
reflect their feelings21 and relate their stories in their own words.22 Interestingly,
actual time spent together is less critical than the perception by patients that they
are the focus of the time and that they are accurately heard. Other aspects
important to the relationship include eliciting patients' own explanations of their
illness,23, 24 giving patients information,25, 26 and involving patients in developing
a treatment plan.27 (For an overview of this area of research, see Putnam and
Lipkin, 1995.28)
cooperation. Given the widespread desire for privacy generally and health
information privacy in particular, any mandatory diminution of that privacy by state
actors should be justifiable in terms that the subject of the information gathering
could agree to as fair in light of others reasonable conceptions of the good.
Certainly some information collection is justifiable in this way: keeping track of
motor vehicles and drivers licenses in order to assure only qualified drivers are on
the roads and that they are using nonstolen vehicles is surely justified in such a way.
But not all health information collection can be so justified. Where collection of
health information does not redound to the benefit of the subject of the information,
and where any health benefits to others are tenuous, small, or attainable in other
ways, it would be difficult to justify the collection as fair to the persons whose
conception of the good includes (or relies on) health information privacy.13 Finally,
there is an important liberty interest at stake in health information
privacy. Boudewijn de Bruin has recently made the case that privacy losses both
limit persons freedom to act in certain ways and decrease those same persons
knowledge about their freedom. If others have information about a person, they
may use that information in a way that affects that persons ability to act. So, a data
breach might give a bank officer information that would lead her to reject a persons
loan application on the ground that shes receiving, say, cancer treatment (2010).
Moreover, de Bruin points out that the value of freedom stems from knowing that
we possess it: uncertainty about the effects of information breaches undermines a
persons ability to act. Relatedly, there is an autonomy interest in understanding
such effects, since information collected for public health can often be used to
delimit a persons opportunities. Information about tuberculosis may be used to
quarantine or isolate people; information about HIV status is used to punish people
who have sex without disclosing their status; information about HIV affects persons
ability to travel and immigrate; information about vaccination affects whether
people can enroll in schools; information about body weight has been proposed as a
basis for an insurance surcharge for diabetics (Lacey 2011); and so forth. More
importantly, the effects of the information may not be known at the time it is
collected. We do not know how information will be used in the future. For these
reasons health privacy with respect to state actors is best understood as a deep,
personal (and nonbasic) interest. It is worth emphasizing that at this point I am
outlining a condition for justifying surveillance and arguing that it is justified to
restrict a claim based on a deep personal interest where exercising that claim
unreasonably threatens basic interests. A fortiori, it would be justified to restrict a
claim based on a nondeep personal interest. Now, in some cases privacy regarding
ones health with respect to state actors may implicate basic interests. As noted, TB
(especially TB that is multidrug resistant or extensively drug resistant) may be
grounds for quarantine or isolation (42 USC 264; 42 CFR 70, 71). Freedom of
movement would seem to be a basic interest. So, at least in some cases, privacy
with respect to state actors, in conjunction with laws enabling further actions based
on that surveillance, implicates basic interests. In such cases, we are not confronted
with conflicts between the basic interests of some individuals and the less weighty
personal interests of others but with conflicts between basic interests.
Subordinating some basic interests for the sake of other basic interests can be
justified by appeal to the number or magnitude of basic interests at stake, such that
if enough others interest in not contracting a disease that is likely to cause serious
illness or death is strongly enough implicated, it can be justified to surveil others
and to quarantine or isolate some. That does not entail that only aggregated
interests matter, just that some degree of aggregation of basic interests can provide
sufficient justification for subordinating of basic interests of others.1
medicine & ethics, public health law conference: practical approaches to critical
challenges spring 2013, Case Western Reserve University)//ASMITH *EHR =
Electronic Health Record
The proliferation of available data is generating much excitement in the public
health community. However, this enthusiasm must be tempered by recognition of
the potential limitations of EHR data. EHRs often contain data entry errors, in part
because they can increase physicians documentation burden. Busy clinicians
sometimes type quickly and invert numbers, place information in the wrong
patients record, click on incorrect menu items, or copy and paste narrative from
prior visits without carefully editing and updating it.8 Much of the information in
EHRs is coded using not only the International Classification of Diseases (ICD- 9) but
also customized lists incorporated into EHR products, and coding can introduce
further errors. Codes may be confusing, misleading or too general to indicate the
specifics of patients conditions.9 Furthermore, EHRs may not accommodate
detailed and nuanced natural language notes about patients medical histories and
diagnostic findings.10 Commentators have noted that providers collect data for
clinical and billing purposes rather than for public health reasons. Thus, EHR content
is not always wellsuited for public health uses. Furthermore, clinicians may have
incentives to upcode in order to maximize charges, and this practice can
systematically compromise the accuracy of many records.11 The menus and lists
built into EHR systems may facilitate upcoding by suggesting items for which
physicians should bill and making it easy to click boxes for charge purposes. In
some instances, EHRs are incomplete, lacking essential information such as
treatment outcomes. Patients who receive medication from their doctors often do
not report whether the therapy was effective. The absence of return visits may
mean that the patients were cured, but it could also indicate that they failed to
improve or deteriorated and decided to visit different doctors or specialists.12 In
addition, patient records are often fragmented. A patient may see multiple doctors
in different facilities, and if these practices do not have interoperable EHR systems,
pieces of the individuals record will be scattered in different locations. Such
fragmentation can hinder surveillance and research efforts because the patients
medical history cannot easily be put together into a comprehensive whole.13 EHR
vendors are making slow progress towards achieving interoperability, the ability of
two or more systems to exchange information and to operate in a coordinated
fashion. In 2010 only 19% of hospitals exchanged patient data with providers
outside their own system.14 Vendors may have little incentive to produce
interoperable systems because interoperability might make it harder to market
products as distinctive and easier for clinicians to switch to different EHR products if
they are dissatisfied with the ones they purchased. The lack of interoperability in
EHR systems can also impede data harmonization. Different systems may use
different terminology to mean the same thing or the same terminology to mean
different things. For example, the abbreviation MS can mean mitral stenosis,
multiple sclerosis, morphine sulfate, or magnesium sulfate.15 If the terms
meaning is not clear from the context, then analysts may not be able to interpret it
correctly.
made to motivate the development of new antibiotics [16,17]), we are left to consider measures to impede the
easy to justify and seems to have almost no drawbacks; restricting specific antimicrobial agents involves a
increasing
the probability of correct treatment. The rationale of restricting specific drugs is an
evolutionary one. The use of a certain antibiotic exerts selective pressure on microbes to
acquire resistance to that antibiotic. However, restricting an antibiotic does not amount to complete
compromise between increasing resistance to a drug saved for the most acute scenarios, versus
avoidance of its usage, as it will still be used against infections resistant to all other antibiotics [20]. Thus an
increase in the frequency of bacteria resistant to the common antibiotics might result in increased usage of the
restricted antibiotic as well.
this topic, from the distributions of fitness costs in experimental populations (Melnyk et al. 2015) and the costs
associations with their genetic basis (Vogwill and MacLean 2015), to the relationship between costs of resistance
and strain backgrounds in different environments (Hall et al. 2015) and the pleiotropic effect of resistance mutation
introduction of penicillin helped cure infections caused by Streptococcus but potentially enabled other bacteria,
multiple-antibioticresistant bacteria such as Clostridium difficile have spread in hospitals around the world, most
often infecting patients treated with antibiotics. Other opportunistic pathogens that can evolve
multidrug resistance, such as Pseudomonas aeruginosa and Acinetobacter baumannii, have increased
in frequency in hospitals (Chen et al. 2008; Giske et al. 2008). Future treatment strategies should
consider how host microbial communities affect patients resistance to infections (Lemon et
such as S. aureus, to fill the vacant niche (Levy and Marshall 2004). More recently,
al. 2012). The study of social interactions in microbes also shows great promises. Excreted proteins can act as
public goods (Griffin et al. 2004), meaning that extracellular resistance mechanisms can contribute to the
protection of whole communities (Dugatkin et al. 2005).
plasmids in experimental populations of bacteria (Yurtsev et al. 2013) and confer protection to unrelated
bacteria species (Perlin et al. 2009). Applying principles of social evolution could lead to new treatments
(Boyle et al. 2013). For example, antivirulence drugs are an especially promising method to
control bacterial infections. Rather than trying to kill bacteria, these drugs modulate social
interactions between microbes, selecting for less virulent variants (Brown et al. 2009; Ross-Gillespie et
al. 2014). For more discussion of the role of evolutionary biology in managing antibiotic resistance in human
medicine and agriculture, refer to Baquero et al. (2015) and Chang et al. (2015), respectively.
sequencing now makes it possible to track the evolution of resistance during single infections and to identify
possible interactions between resistance mutations and other traits (Lieberman et al. 2011). Because the
evolution of resistance depends greatly on the mutation supply rate (i.e., the combined
effect of population size and mutation rate), mechanisms that increase the mutation rate are likely to increase the
Gutierrez et al. 2013). The mutagenic effect of different antibiotics is mainly associated with the induction of the
SOS response, which is caused by oxidative stress and DNA damage (Radman 1975; Friedberg et al. 2002).
Rapid
choice to treat the bacterium (Barber and Rozwadowska-Dowzenko 1948; Nichols and Needham 1949; Rountree and
Thomson 1949). The story repeated itself countless times with resistance emerging in hospitals
following the introduction of each new antibiotic. For example, aminoglycoside kinases, a large group of enzymes
modifying the structure of aminoglycoside antibiotics, were discovered after the introduction of streptomycin, the
first antibiotic discovered through a directed search for an antimicrobial (Davies 1994). Efflux pumps, one of the last
major groups of resistance genes to be discovered, were first associated with tetracycline resistance in the 1970s
(Ball et al. 1980; McMurry et al. 1980). Soon after, other efflux mechanisms in a variety of organisms were found
that conferred resistance to different antibiotics. Efflux pumps remain one of the most common forms of
antimicrobial resistance (Poole 2005). Over the past sixty years of research, multiple variants of each resistance
mechanism group have been described.
hospitals. As early as 1952, it was reported that most infectious staphylococcal strains were resistant to
penicillin and tetracycline (Rountree and Thomson 1949; Clarke et al. 1952; Lowbury et al. 1952; Kirby and Ahern
(Ochman et al. 2000). Unlike meiotic sex in eukaryotes, genetic exchange of DNA fragments in bacteria is
drugresistant genes, can spread from one bacterium to another through plasmids, bacteriophages,
unidirectional and independent of reproduction (Redfield 2001; Vos 2009). Genetic material, including
and transposons [for a comprehensive review, see Thomas and Nielsen (2005)]. Although many of these mobile
genetic elements can in theory evolve somewhat independently from other genes (e.g., as selfish genetic
also be transferred via homologous recombination or transformation, the uptake of naked DNA in the environment
(Vos 2009). Transformation is believed to have enabled the evolution of penicillin-resistant Streptococcus
pneumoniae, an important pathogenic bacterium, through the acquisition of genes from Streptococcus viridans, a
At the very least, the defence will have to be vigilant and collectively smarter
than the offence. The only way for the defence to win convincingly in the
biological arms race would seem to be to succeed in discovering and
implementing certain de facto last-move defences, at least on an organism-byorganism basis. Perhaps there are defences, or a web of defences, that will
prove too difficult for any plausible non-state actor to engineer around. Whether
such defences exist is unclear at this time, but their exploration should be a
long-term research goal of US biodefence efforts. Progress might also have an
important impact on international public health. One of the Grand Challenges
identified by the Bill and Melinda Gates Foundation in its $200m initiative to
improve global health calls for the discovery of drugs that minimise the
emergence of drug resistance a kind of last move defence against the
evolutionary countermeasures of natural microbes.41 Should a collection of
such defensive moves prove possible, bioterrorism might ultimately succumb
to a kind of globalised dissuasion by denial :42 non-state groups would
calculate that they could not hope to achieve dramatic results through
biological programmes and would choose to direct their efforts elsewhere.
practice medicine. "I am fed-up with the shameless tactics of some personal injury
lawyers and the out-of-control litigation that endangers our access to healthcare,"
Dr. Connell said. "I am very pleased to be part of the Sick of Lawsuits campaign and
to help to inform Americans about how lawsuit abuse threatens our entire
healthcare system." In a recent press release, stated the following "Lawsuit Abuse
Facts: " According to a recent Towers Perrin study, the U.S. tort liability system cost
each U.S. citizen $721 in 2001 ($205 billion total). More than 40 percent of doctors
reported avoiding prescribing appropriate medication because they knew the drug
might be involved in litigation. Personal injury lawyers walk away with 30-50 percent
of any jury award to the plaintiff, plus an additional percentage of the award to
cover expenses. Since its widely used cholesterol-lowering drug Baycol was
withdrawn from the market, Bayer is facing more than 8,000 lawsuits. The New York
Times notes that at least 6,000 of those lawsuits, however, are being filed by people
who did not suffer any side effects whatsoever. Their web site state these "Fast Facts
- Symptoms of Lawsuit Abuse:" Lawsuit abuse affects all Americans on different
levels. 80% of Americans say personal injury attorneys take too much of their
clients' winnings. 76% of Americans believe medical liability lawsuits threaten
access to quality healthcare for families. 74% of Americans describe medical liability
issue as crisis or major problem. By 61% to 22% margin, Americans say lawsuits
against doctors result in wealthy lawyers rather than improved quality of care for
patients. Lawsuit costs passed on to consumers add up to nearly $721 per year for
every person in America today. Because of litigation fears, 79% of doctors said they
had ordered more tests than they would based only on professional judgment of
what is medically needed. It takes at least a year to resolve most lawsuits, and
delays of three to five years are not uncommon. Unfortunately, injured people with
legitimate claims can wait years before their cases go to trial. An estimated $50
billion per year is spent on unnecessary test procedures designed only to guard
doctors and hospitals against malpractice claims. Almost half of the money spent by
physician insurers goes towards defending cases that ultimately are closed without
compensation paid to the claimant.
that the development pipeline is running dry. We don't have new antibiotics that we
can rely on in the immediate future or in the longer term." Changes in modern
medicine have exacerbated the problem by making patients more susceptible to
infections. For example, cancer treatments weaken the immune system, and the
use of catheters increases the chances of bugs entering the bloodstream. "We are
becoming increasingly reliant on antibiotics in a whole range of areas of medicine. If
we don't have new antibiotics to deal with the problems of resistance we see, we
are going to be in serious trouble," Johnson added. The supply of new antibiotics has
dried up for several reasons, but a major one is that drugs companies see greater
profits in medicines that treat chronic conditions, such as heart disease, which
patients must take for years or even decades. "There is a broken market model for
making new antibiotics," Davies told the MPs. Davies has met senior officials at the
World Health Organisation and her counterparts in other countries to develop a
strategy to tackle antibiotic resistance globally.
rendering them ineffective. Were all familiar with the hospital superbug MRSA
(methicillin-resistant Staphylococcus aureus), but that just scratches the surface on
this now incredibly widespread problem. Not only does AMR make infections more
difficult to treat, it also means that relatively minor injuries and common infections
have the potential to become life threatening. If we dont step up our game, the
achievements of modern medicine are seriously at stake. In order to compile this
report, the WHO gathered and analyzed surveillance data from 114 countries which
detailed resistance rates amongst common disease causing pathogens. Amongst
the findings was the worrying fact that the bacterial species K. pneumoniae, which
commonly causes infections in hospitals and the community, is becoming
increasingly resistant to last resort antibiotics, and drug resistance was found in
every region surveyed. Other bacterial species demonstrating both widespread and
high levels of drug resistance were E. coli and S. aureus, which can cause urinary
tract infections and blood stream infections. Around 20% of tuberculosis cases were
also found to have multidrug-resistant TB. The report also highlighted increasing
resistance to antiviral drugs by both influenza viruses and HIV. In particular, they
found that drug resistant HIV strains were being increasingly transmitted since
between 10-17% of HIV infected patients in certain countries that had never
received treatment were already resistant to at least one antiretroviral drug.
Antibiotic resistance is on the rise because of overuse and misuse of antibiotics both
in medicine and agriculture. Not finishing the course of antibiotics and prescribing
antibiotics when they are not needed both encourage the emergence of resistance.
There is therefore a dire need for the development of novel antibiotics before the
current ones become useless, meaning that common infections risk becoming fatal.
Hopefully this report will spur countries to come together to formulate a global plan
to prevent this ominous situation from worsening, and may also serve to monitor
future progress.
polymers change. Investigators are also developing peptide-based receptors that bind selectively to pathogenic bacteria. Investigators at ECBC are working on peptide-based receptors
that bind toxins, such as ricin and staphylococcal enterotoxin B, and on designing and fabricating a DNA/RNA microarray capable of detecting and identifying pathogens down to the
level of different strains. These technologies can also be used for monitoring food and water for contamination. Catalytic Inactivation of Toxic Agents Individual Force Health
Protection, Individual Force Protection, and Force Protection are being addressed through investment in catalytic enzymes and drug design and testing to protect against toxic chemical
and biological agents. At the U.S. Army Medical Research Institute of Chemical Defense, bioengineered recombinant butyrylcholinesterase is being investigated for use as prophylaxis
against the adverse effects of exposure to nerve agents, such as sarin, soman, tabun, and VX. This enzyme mimics acetylcholinesterase and competes with it for binding nerve agents,
thus reducing the level of acetylcholinesterase inactivation. It is anticipated that a single dose of this enzyme will be capable of scavenging nerve agent through stoichiometric binding
for up to eight hours. Current efforts are directed at engineering the enzyme so that it has catalytic activity in vivo and exploring the use of a transgenic goat model for generating
sufficient quantities of engineered enzyme to conduct clinical trials. At ECBC, recombinant enzymes are being incorporated into fabrics and polyurethane foams for nonmedical
protection and into sprays, detergents, degreasers, and other matrices for decontamination following exposure. Enzymes for hydrolyzing G-type and V-type nerve agents have been
identified, cloned, and optimized. Organophosphorus acid anhydrolase, which works against the G agents sarin, soman, and tabun, is in large-scale process development. Random and
site-directed mutagenesis has resulted in variants of organophosphorus hydrolase enzyme with increased activity against the V-type agent VX. Organophosphorus hydrolase is also
currently in process development. In addition, a bacterial enzyme has been identified that hydrolyzes sulfur mustard, and a collaborative project is under way with Rockefeller University
to assess the effectiveness of using bacteriophage lysins to destroy anthrax spores (Schuch et al., 2002). Biomembrane and Fiber Generation The Army is investing in bioderived
materials and molecular recognition as part of Individual Force Protection, Force Protection, and Intervention. A process called electrospinning is being used at the Natick Soldier Center
to produce high-surface-area nanofiber membranes with unique reactive sites for selective immobilization of biological recognition elements. The current focus is on including
immobilized antibodies and antimicrobial peptides on electrospun nanofibrous poly(epsilon-caprolactone) (PCL) for selective binding to pathogens. These materials can be used in the
development of clothing-based biosensors and in filtration of pathogens from food, water, and clothing. Other electrospun polymeric materials include polyurethanes and polyvinyl
chloride. Biomembranes and fibers are also being investigated at the Institute for Soldier Nanotechnologies. There, electrospun polymers are being used as extracellular matrixmimicking scaffolds to support tissue regeneration and as vehicles for delivering drugs and biologics that promote tissue healing after injury. Protection against Ballistics Hard and
lightweight ceramic materials, such as boron carbide, are incorporated into body armor and other forms of protective shielding. Research is now focusing on bioderived nanoceramics in
support of Individual Force Protection and Force Protection. In nature, organisms can form ceramics under mild conditions using protein-directed templated crystallization mechanisms.
Identifying novel peptides that control inorganic ceramic architecture is a technical challenge being addressed at the Natick Soldier Center. Based on our current understanding of how
nature nucleates inorganic nanocrystallization, researchers are attempting to use biomimetic approaches to create novel materials not found in nature. For example, the proteins that
direct crystallization for generation of sea urchin spicules are being genetically modified to favor ions, such as boron and aluminum, rather than the naturally incorporated ions of
calcium and silica. Systems Engineering Issues A key challenge to realizing the Soldier System of Systems is to provide a comprehensive range of capabilities while simultaneously
meeting stringent military requirements to minimize weight and power consumption. Todays soldiers may carry as much as 100 pounds of equipment. In keeping with requirements for
increased mobility, the objective is to reduce the effective load to less than 40 pounds by developing efficient multifunctional systems for the Soldier System of Systems. Examples
include a single system for detecting exposures to chemical warfare agents, toxic environmental chemicals, biowarfare agents, and/or infectious pathogens and a single vaccine system
for protecting against multiple pathogenic organisms. The problem is complicated because of potential interactions among drugs and vaccines that can decrease their effectiveness or
increase their toxicity. Another concern about biologically based systems is their stability and durability. Many biological molecules are susceptible to degradation, and it remains to be
seen whether bio-based materials and sensors will be able to perform well under rugged field conditions in which they are exposed to extremes of temperature and humidity, the
could be logistically
insupportable or unaffordable if stockpiles must be frequently refreshed.. Other
major challenges to realizing the Soldier System of Systems are gaps in our
knowledge. Despite substantial progress in the enabling technologies for
engineering sensors and DNA vaccines, questions remain about which
biomolecules are appropriate for sensing and why some vaccines fail to elicit a
protective response. We will certainly need more basic research on enabling
technologies and their applications. By continually monitoring progress in basic
and applied research in the academic, governmental, and industrial
communities, the Army can hope to fill these knowledge gaps, identify the
most promising enabling technologies, and promote their development by carefully
directing its investments.
possibility of oxidation, and other stresses. Biomaterials must also have a reasonably long shelf-life, because perishable materials
Therefore, developing new treatments, cures and health technologies is one of the
most important steps we can take not only to save lives and improve the quality
of life, but also to avoid the expenditure of enormous amounts of health care
dollars. How much savings does medical innovation produce? There is not one,
simple answer to that question. However, there are numerous academic and
government statistics that point to the economic benefits of innovation in the
health-care marketplace. In a paper published by the Journal of Political Economy in
2006, it was estimated that over the preceding 50 years, medical innovation had
been the source of nearly half of all economic growth in the United States.
Impressively, for every dollar spent on innovative medicines, total healthcare
spending is reduced by $7.20, according to an NBER paper. As for the price of
medicine in America, only 9 cents of every health care dollar spent in America goes
to medicines, according to the Centers for Medicare & Medicaid Services (CMS) in
2013. The other 91 cents goes to hospitals, physicians, clinics, long-term care
facilities, and government administration and net cost of health insurance. Imagine
if we could use that 9 cents to reduce the remaining 91 cents or even avoid
significant portions of it in the first place. The result would be saved lives and even
greater health-care savings. Medication Adherences Important Role Medication
adherence also plays an important role in health-care savings, as medical
innovations can provide no benefit if they are not accessed by patients. Of the
approximately 187 million Americans who take one or more prescription drugs, it is
estimated that up to one-half do not take their medications as prescribed. Poor
medication adherence results in 33 to 69 percent of medication-related hospital
admissions in the U.S., at a cost of roughly $100 billion per year. In total, nonadherence to prescribed medicines results in approximately $290 billion in
unnecessary spending annually. Americans with chronic conditions account for 84
percent of health care spending. In 2011, this totaled more than $2 trillion. By using
medical innovations to prevent or better manage the most common chronic
diseases, the U.S. could decrease treatment costs by $218 billion per year and
reduce the economic impact of disease by $1.1 trillion annually. For diabetes, the
total costs of this chronic disease rose to $245 billion in 2012 from $174 billion in
2007. Without a cure, in the next 25 years, annual spending on diabetes is forecast
to increase steeply to approximately $336 billion annually. For Alzheimers disease,
in the absence of disease-modifying treatments, the cumulative costs of care for
people suffering with Alzheimers from 2010 to 2050 are expected to exceed $20
trillion. A treatment breakthrough that only postpones the onset of Alzheimers by
as few as five years could result in annual Medicare savings of $33 billion in 2020
and climb to $283 billion by mid-century, while annual Medicaid savings could
increase from $9 billion in 2020 to $79 billion in 2050. A 2007 Milken Institute paper
reported that cancer treatment results in a tenfold increase in productivity
specifically, $37 billion in cancer treatments resulted in an estimated $373 billion in
increased productivity. While the monetary cost savings of medical innovation are
extraordinary, the value to patients is nothing short of priceless. For example,
according to the American Cancer Society, U.S. cancer survivorship alone has more
than tripled since 1970, with nearly 14.5 million cancer survivors alive in the
country this year. Also, as of 2014, the U.S. five-year survival rate for all cancers
diagnosed between 2003 and 2008 is 68 percent. With HIV/AIDS, medical innovation
has delivered an astounding 3 million life years, which has produced an economic
value of $1.3 trillion, according to a 2006 published paper. Medical Innovation: A Key
Part of the Solution Medical innovation is complex, high-risk, time-consuming and
extremely expensive. But it is clear that medical innovation is a key part of the
solution not only to alleviating human suffering, but also to reducing significantly
the incalculable costs associated with treating that suffering. As a society, we need
to recognize the enormous multifaceted return on the investment in medical
innovation, and nurture rather than stifle the virtuous cycle of better health,
longer life and economic benefit resulting from life sciences innovation.
Medical innovation is key to the economy---increased lifeexpectancy positively correlates with growth
---answers the life-expectancy turn
anticipated at being 85 years of age, while the rest of the world is estimated to be
at 72 years of age. According to Frank Lichtenberg, Ph.D., new therapies are the
greatest contributor to increased life expectancy. A business professor at Columbia
University, Lichtenberg assessed the contribution of pharmaceutical R&D to
longevity and the economic growth which results. You may find some of his insights
startling. First, the pharmaceutical industry is the most R&D-intensive sector of the
economy, not technology. Second, the rate of return on investment in
pharmaceutical R&D is 18%. Third, using newer drugs actually decreases overall
healthcare costs, with much of the savings being due to reduced hospital stays and
physician office visits. For $1 spent on innovative medicines, healthcare spending is
reduced by approximately $7.20. So let me ask you what type of financial impact
does living longer have economically? According to University of Chicago
economists Kevin Murphy, Ph.D., and Robert Topel, Ph.D., who calculated cumulative
gains in life expectancy after 1900 to be worth over $1.2 million to the
representative American in the year 2000. Further, in the 30 years between 1970 to
the year 2000, life expectancy gains added approximately $3.2 trillion per year to
the national wealth of the United States. But medical innovation contributes more
than just living longer and accumulation of wealth. Medical Innovation Economics
101 Over the past 50 years, medical innovation has been the source of more than
50% of all economic growth in the United States. It is estimated that there are more
than 650,000 jobs in the U.S. biopharmaceutical sector, with each of these jobs
supporting an additional five jobs in other sectors. In a report by Battelle, a
nonprofit R&D organization, the overall economic impact of the biopharmaceutical
sector on the U.S. economy in 2009 (as measured by output) was estimated to be
more than $917 billion on an annual basis. Further, the biopharmaceutical sector
generated nearly $85 billion in state, local, and federal tax revenues for 2009. The
annual average personal income of a biopharmaceutical worker in 2009 was nearly
twice the average across all private sector industries ($118,690 vs. $64,278). When
you compare export numbers among industries, you may be surprised to learn that
in 2010 the U.S. biopharmaceutical industry exported $46.7 billion, which is more
than automobiles ($38.4 billion), plastics and rubber products ($25.9 billion),
communications equipment ($27 billion), and computers ($12.5 billion). With all of
these positive U.S. economic attributes, why then does it seem everyone is intent
on killing the golden goose that medical innovation represents? The Obama
administration is pushing for policy changes to Medicare Part D, which if enacted
will most likely result in decreased pharmaceutical R&D spending, as well as the
loss of possibly 250,000 high wage jobs. So Paul, to answer your question, the
pharmaceutical industry is BIG. How important is medical innovation to the
U.S. economy VERY!
healing of these ulcers.17 The limited production of this body of research becomes
increasingly problematic as major increases in public funding for basic research
generate an expanding range of potentially valuable technologies in need of careful
objective evaluation.
Disease A2 Burnout
Disease causes extinction -- Burnout is wrong
Karl-Heinz Kerscher 14, Professor, Space Education, Wissenschaftliche Studie,
2014, 92 Seiten
The death toll for a pandemic is equal to the virulence, the deadliness of the
pathogen or pathogens, multiplied by the number of people eventually infected. It
has been hypothesized that there is an upper limit to the virulence of naturally
evolved pathogens. This is because a pathogen that quickly kills its hosts might not
have enough time to spread to new ones, while one that kills its hosts more slowly
or not at all will allow carriers more time to spread the infection, and thus likely outcompete a more lethal species or strain. This simple model predicts that if virulence
and transmission are not linked in any way, pathogens will evolve towards low
virulence and rapid transmission. However, this assumption is not always valid and
in more complex models, where the level of virulence and the rate of transmission
are related, high levels of virulence can evolve. The level of virulence that is
possible is instead limited by the existence of complex populations of hosts, with
different susceptibilities to infection, or by some hosts being geographically
isolated. The size of the host population and competition between different strains
of pathogens can also alter virulence. There are numerous historical examples of
pandemics that have had a devastating effect on a large number of people, which
makes the possibility of global pandemic a realistic threat to human civilization.
Modeling/Leadership
Global disease surveillance is modeled after the United Stateseven if they win there is no precedent, its empirically proven.
Additionally, member nations wont comply if federal
surveillance overwhelms local authority.
Calain 07 (Philippe Calain, Senior Researcher at the Research Unit on
Humanitarian Stakes and Practices, based in the Swiss section of Medecins sans
Frontie`res. Trained as a medical doctor and a specialist in infectious diseases and
tropical medicine, he has over ten years of experience in international public
health Exploring the International Arena of Global Health Surveillance,
Published in Health Policy and Planning
http://heapol.oxfordjournals.org/content/22/1/2.full)
In May 2005, the 58th World Health Assembly adopted a much overdue revision of the
IHR, referred to as the IHR(2005) (WHO 2005a). Compared with the 1969, 1973 and 1981 versions of the IHR , the
revised regulations expand considerably the scope of internationally notifiable
epidemic diseases, they accommodate criteria for novel epidemic events and they set out conditions for
involvement of the international community in outbreak response. In May 1995, the 48th World Health Assembly
had already adopted two resolutions calling, respectively, for a revision of the IHR and for the establishment of a
comprehensive programme to tackle new, emerging and re-emerging infectious diseases (WHO 1995a).
Accordingly, in October 1995, a new unit was established at WHO as the Division of Emerging Viral
and Bacterial Diseases Surveillance and Control (EMC) (WHO 1995b), to be later renamed successively as the
operational support of CSR team members, a Global Outbreak Alert and Response Network (GOARN) was created to
coordinate technical resources involved worldwide in combating outbreak-prone diseases (Enserink 2004). The
apparent success of GOARN and collaborating technical partners in limiting the international spread of SARS in 2003
(Heymann and Rodier 2004) has vindicated efforts led by WHO to put the control of emerging or re-emerging
diseases high on the global health agenda. Next to giving itself the necessary legal instruments (through the
revised IHR) and putting itself in a position to coordinate international response to outbreaks (through the GOARN),
Asia to the entire Old World, have been putting this concept to the test. The SARS and avian influenza epidemics have certainly
helped in facilitating the acceptance of the new IHR, through their combined health and economic impacts. Avian influenza H5N1 is
now in the limelight of international health concerns by being seen as a possible precursor of an upcoming human pandemic (WHO
2005b). Since the end of 2005, several high profile meetings in Geneva, Ottawa, Tokyo and Beijing have tried to mobilize the
international community to shift health priorities and financial resources toward preparedness against the anticipated influenza
pandemic (Health Canada 2005; World Bank 2005; WHO 2005c; WHO Regional Office for the Western Pacific 2005). In May 2006, the
59th World Health Assembly called upon Member States to speed up the implementation of the IHR(2005), or at least of the
provisions that are deemed relevant to the hazards posed by avian influenza and pandemic influenza (WHO 2006). Historical
landmarks of public health surveillance Public health surveillance applied to outbreak detection and monitoring is not a new idea.
During the plague of London in 1665, parish clerks compiled weekly bills of mortality detailing about 40 different causes of death
(Naphy and Spicer 2001). In a recent era, the most influential character was Alexander Langmuir who established and popularized
the modern concepts of disease surveillance, following the footsteps of the 19th century statistician William Farr (Thacker and Gregg
1996).2 A public health epidemiologist by training, Langmuir pursued an academic career in parallel with holding high-level positions
in committees of the US Department of Defense overseeing THE INTERNATIONAL ARENA OF GLOBAL PUBLIC HEALTH SURVEILLANCE
3 by guest on July 23, 2015 http://heapol.oxfordjournals.org/ Downloaded from biological warfare programmes during the World War
II and the Cold War periods (Fee and Brown 2001). In 1949, he was recruited to the US-CDC, to become its chief epidemiologist.
Building upon the US experience of malaria and poliomyelitis eradication programmes, he designed a remarkably successful national
system of disease reporting and created the Epidemic Intelligence Service. The 1990s saw the rise of the emerging diseases
worldview, a post-colonial concept rooted in new biomedical concerns as much as in perceived threats from a de-territorialized
world.3 A landmark 1992 report of the US National Academy of Science (Institute of Medicine 1992) formalized the definitions of
emerging and re-emerging diseases and explicitly discussed their global implications. The social, humanitarian, economic and
political fallout of (re)-emerging diseases became obvious, first in 1991 when cholera reappeared in South America (Sanchez and
Taylor 1997) and next in April 1994 when plague broke out in Surat, India (Garrett 2001). The latter circumstance showed how panic
and lack of leadership can lead to unnecessary impacts on national economies and on local communities (Cash and Narasimhan
2000). In April 1995, an outbreak of highly fatal cases of haemorrhagic fever in Kikwit in the Bandundu Province of DRC (former
Zaire) came to the attention of the international health community through a network of informal and rather delayed channels,
before it could be confirmed as the re-emergence of an Ebola virus. It attracted an unusual amount of press coverage and scientific
attention worldwide, partly justified by concerns over international spread. Lessons from the outbreak in Kikwit (Heymann et al.
1999) led to surveillance being put at the core of CSR activities, and to the revival of interest in the International Health
Regulations.4 Precursor regimes of international governance on communicable diseases actually date back to the first International
Sanitary Conference of 1851. Under their successive formats, they already incorporated mixed concerns over public health as well
as related trade and political issues (Fidler 2003). Their impact seems, however, to have been rather limited. In contrast, the
widespread interest in international health regulations seen at the present time reveals new dimensions to the global public health
debate, as well as far-reaching implications of global surveillance. Semantic ambiguities When Alexander Langmuir (1963, 1971)
redefined surveillance to fit his own public health purposes, he departed from a former meaning which restricted the term to
individuals, i.e. typically contacts who had to be followed up for signs of disease without restricting their movements by isolation or
quarantine.5 Instead of individuals, Langmuirs (1963) modern view of surveillance applies to diseases, as defined by: the continued
watchfulness over the distribution and trends of incidence through the systematic collection, consolidation and evaluation of
morbidity and mortality reports and other relevant data. Intrinsic in the concept is the regular dissemination of the basic data and
interpretations to all who have contributed and to all others who need to know. With some prophecy, Langmuir anticipated future
problems and cautioned that: the actual performance of the research study should be recognized as a function separate from
surveillance. The blurred boundary between research and surveillance is a critical issue that was later emphasized by
Stephen Thacker, a succeeding senior epidemiologist at the US-CDC .6 Thacker noted the
ambiguities carried under disease surveillance and epidemiologic surveillance, and he advocated the
term public health surveillance to avoid confusion with epidemiologic research
(Thacker and Gregg 1996). Directly inspired by Thackers definition, the WHO definition of
public health surveillance proposed under resolution WHA58.3 (WHO 2005a) is clear enough to avoid
confusion with research activities: Surveillance means the systematic ongoing collection, collation and analysis of
data for public health purposes and the timely dissemination of public health information for assessment and public
IHR appear in successive versions of a decision instrument annexed to the IHR(2005) (WHO 2004a). Initially
designed exclusively as a criteria-based algorithm, the final version of the annex ultimately includes as well a
number of specific diseases, leaving it open to frequent updates as new pathogenic agents become identified. In
the same line, it is not explicit whether the IHR(2005) have regulatory authority over programme evaluation as well
as detection of epidemics, both being classical components of communicable diseases surveillance.7 In a
conceptual framework endorsed by members of the CSR team (McNabb et al. 2002), the two related components of
public health action (acute epidemic-type response and planned management-type response) are explicitly
considered as complementary outputs of public health surveillance. What will be missing in some cases of new
epidemic threats, especially when the risk assessment is inconclusive, is a gauge of the degree of urgency from
which international action is legitimate. These issues have some relevance obviously in terms of national
sovereignty. More recently, WHO has been promoting, developing and implementing in several countries the
relatively new concept of Early Warning Systems (EWARS) for outbreak surveillance (WHO 2005d). Direct reference
to EWARS would perhaps have lifted some ambiguities carried by too loose a definition of surveillance and would
have better clarified the scope of the IHR(2005) and their derived requirements for Member States. Of equal
relevance to the scope of the IHR(2005) is the lack of conceptual clarity over the term global health security
(Aginam 2005; McInnes and Lee 2006). Global health security features prominently in WHO policy documents (for
an example see WHO 2001) to summarize the overall strategy 4 HEALTH POLICY AND PLANNING by guest on July
23, 2015 http://heapol.oxfordjournals.org/ Downloaded from covered by epidemic alert and response activities.
Other international alliances (Global Health Security Initiative 2006) use the term with a clear orientation toward the
public health response to the specific threats of international biological, chemical and radio-nuclear terrorism.
(2005) (which are to become legally binding in June 2007) will obviously
successive consultations leading to resolution WHA58.3 (WHO 2004a). The issue has an additional level of
for countries with federal governments, where authority over public health
is generally devolved to regional jurisdictions (Wilson et al. 2006). The IHR(2005) do not include a
complexity
sanctions regime for States that fail to comply with their provisions (WHO 2005e). Several jurists (Plotkin and
Kimball 1997; Fidler 2003) have stressed the marginal role of former versions of the IHR compared with other
international regimes, notably the World Trade Organization8 and its related multilateral agreements dealing in a
more direct way with factors causing the emergence of communicable diseases. It is, however, likely that the new
IHR will become more influential than their precursor versions of 1969, 1973 and 1981, for several reasons: (1) the
broader scope of health events under consideration, (2) a more active and better defined role for WHO in the
response phase, and (3) more flexible mechanisms for WHO to circulate information critical to control public health
threats (including information from non-official sources or about non-compliant state parties). Despite the latter
opportunity embedded in the new IHR, it will remain as difficult as ever for WHO to exercise its handling of sensitive
information, especially in a world where the press and the public are the driving forces behind increased
transparency.
in cases involving domestic policy issues that are at the heart of partisan political
were unusually prominent. Second, rather than amounting to casual allusions, they
represent a calculated step by key justices on the Court --led by Justice Breyer, but also joined
defined, but rather
contention, they
by Justices Ginsburg, Kennedy, and O'Connor-to bring the Court's approach toward constitutional interpretation into
line with new approaches being taken by justices in the courts of other countries.2 And third,
these efforts in
the American judiciary are taking place in a distinctive reformist intellectual context in which many
scholars and activists, both in the United States and around the world, are coming to
understand legal transnationalism as an imperative .' As is evident from even the most casual
perusal of the increasingly high profile journals of international law, scholars are now hard at work trying out
alternative doctrines, seeking those that will be least politically vulnerable. Debates involving the applicability of
the law of nations, customary international law, treaties, international agreements and pronouncements, and
foreign practices, precedents, judicial reasoning (under the guise of "constitutional borrowing"), and public opinion
to the decisionmaking processes of American judges deciding domestic constitutional cases, more and more are
filling pages of these law journals. These calculated efforts to transform the way in which the Court considers
domestic constitutional issues may very well mark the beginning of a major departure in the direction of American
constitutional law.
and instruments recommended and applied in the private sector. However, quality assurance models in the sector
of manufacturing and commercial services not necessarily work well in social services. Th erefore, approaches
intended to take due account of their specifi cs are being developed. However, it is not certain whether even those
service models and standards that are well adjusted to specifi cs of the social sector will have a signifi cant impact
on improvement of the clients quality of life, in particular in social care institutions. Presently,
Poland
implements a systemic project Operational Programme Human Capital Creating and Developing
Standards for Social Welfare and Integration Institutions, whose name originally contained the words quality
standards, but quality was dropped from a successive version46. It is not known why this change was made
(perhaps due to the conviction that ISO quality management standards are not adequate for social welfare
Disparate Impact
Health surveillance disproportionately targets minorities and is
ignored by activist the plan is key
Hoppin 12 (Margaret, J.D. at New York University School of Law,
Overly Intimate Surveillance: Why Emergent Public Health
Surveillance Programs Deserve Strict Scrutiny Under The Fourteenth
Amendment, December 2012, NYU Law Review, Hein Online)//JL
Security surveillance programs that target politically vulnerable domestic
communities for dragnet surveillance have prompted wide-spread concern in the last decade,
although legal challenges to national security programs generally have not reached a decision on the merits.141
said they would not have allowed such a program if they had known about it.143 Academics and academic institutions expressed similar concern and criticism.144 Community leaders petitioned the New Jersey Attorney General
to investigate a New Jerseybased surveillance program and give a full accounting of ongoing surveillance.145 In
and the rates and severity of related complications.148 The same is true of obesity and obesity-related health
the A1C registry and to hold a public comment period.153 On August 16, 2005, the Department held a public
hearing on its proposal.154 In response, the Department received only thirty-one written comments;155 at the
hearing, six health care practitioners and one member of the health care technology industry testified in support,
munity has not responded much at all. Of the handful of commenta-tors on the program, most emphasize its
no one has challenged the program in court. In addition, despite similarities between the A1C Registry and an HIV
surveillance program proposed by the Department at the same time,161 the objections of the
better-organized HIV community held more traction . . . [and] effectively thwarted more
potential as a public health tool.160 Perhaps even more surprising,
aggressive surveillance.162 The HIV proposal prompted both the medical community and a wider public [to take]
notice and . . . grapple with the meaning of expanded surveillance.163
in the context of public health surveillance?103 What about the fact that
?104 and are therefore more likely to be targets of surveillance?104 B.Similarities in Security Surveillance and Public Health Surveillance Courts and
addressed similar questions in the context of security surveillance programs. In particular, they
have
programs,
similar estimate in which 41% to 49% of CODIS profiles are from African
Americans.87 The extension of DNA collection by the federal government and a
number of states to people who are only arrestedas opposed to charged or
convictedbrings many more whites into the system, but it is also on its way to
creating a nearly universal database for urban black men.88 These men are
arrested so routinely that upwards of 90% would be included in databases if the
collection policy is strictly enforced.89 In April 2010, Arizona Governor Jan Brewer
signed a controversial law giving police broad authority to detain anyone suspected
of being in the country illegally.90 This law is held up as a model for immigration
enforcement policy in other states.91 When combined with congressional
authorization of DNA sampling from all federal detainees,92 these immigration laws
will cause the number of Latino profiles in CODIS and state databases to skyrocket.
Police routinely consider race in their decision to stop and detain an individual.93 A
New York Times/CBS News Poll conducted in July 2008 asked: Have you ever felt
you were stopped by the police just because of your race or ethnic background?94
Sixty-six percent of black men said yes, compared to only 9% of white men.95 The
United States Supreme Court has authorized police to use race in determining
whether there is reasonable cause to suspect someone is involved in crime.96
Michelle Alexander calls the Courts license to discriminate the dirty little secret of
policing.97 In recent decades, a conservative Supreme Court has eroded the
Warren Courts protections against police abuse in ways that promote the arrest of
blacks and Latinosrelaxing, for example, the standard for reasonable suspicion
and has blocked legal channels for challenging racial bias on the part of law
enforcement.98 There is overwhelming evidence that police officers stop motorists
on the basis of race for minor traffic violations, such as failure to signal a lane
change, often as a pretext to search the vehicle for drugs.99 One of the first
confirmations of this was a 1992 Orlando Sentinel study of police videotapes that
discovered that, while blacks and Latinos represented only 5% of drivers on the
Florida interstate highway, they comprised nearly 70% of drivers pulled over by
police and more than 80% of those drivers whose cars were searched.100 A study
of police stops on the New Jersey Turnpike similarly found that, although only 15%
of all motorists were minorities, 42% of all stops and 73% of all arrests were of black
drivers.101 In Maryland, only 21% of drivers along a stretch of I-95 outside of
Baltimore were African Americans, Asians, or Latinos, but these groups made up
nearly 80% of those who were stopped and searched.102 Likewise, an Illinois state
police drug interdiction program, known as Operation Valkyrie, targeted a
disproportionate number of Latinos, who comprised less than 8% of the Illinois
population but 30% of the drivers stopped by drug interdiction officers for petty
traffic offenses.103 Police officers also make drug arrests in a racially biased
manner. Although whites use drugs in greater numbers than blacks, blacks are far
more likely to be arrested for drug offensesand, therefore, far more likely to end
up in genetic databases.104 The latest National Survey on Drug Use and Health,
released in February 2010, confirms that young blacks aged eighteen to twenty-five
years old are less likely to use illegal drugs than the national average.105 Yet, black
men are twelve times more likely than white men to be sent to prison on drug
charges.106 This staggering racial disparity results in part from the deliberate
decision of police departments to target their drug enforcement efforts on urban
and inner-city neighborhoods where people of color live. Indeed, the increase in
both the prison population and its racial disparity in recent decades are largely
attributable to aggressive street-level enforcement of the drug laws and harsh
sentencing of drug offenders.107 A crusade of marijuana arrests in New York City in
the last decade provides a shocking illustration.108 Since 1997, the New York Police
Department (NYPD) has arrested 430,000 people for possessing tiny amounts of
marijuana, usually carried in their pockets. 109 In 2008 alone, the NYPD arrested
and jailed 40,300 people for the infraction.110 Even more alarming is the extreme
racial bias shown in whom the police target for arrest. Although U.S. government
studies consistently show that young whites smoke marijuana at the highest rates,
white New Yorkers are the least likely of any group to be arrested.111 In 2008,
whites made up over 35% of the citys population but less than 10% of the people
arrested for marijuana possession. 112 Instead, the NYPD has concentrated arrests
on young blacks and Latinos. Police arrested blacks and Latinos for marijuana
possession at seven and four times the rate of whites, respectively.113 The racist
marijuana policing strategy is based on the routine police practice of stopping,
frisking, and intimidating young blacks and Latinos. According to Harry Levine, the
City University of New York sociologist who exposed the arrest campaign, In 2008,
the NYPD made more than half a million recorded stop and frisks and an unknown
number of unrecorded stops, disproportionately in black, Latino and low-income
neighborhoods.114 Although New York City is the marijuana arrest capital of the
world, other cities like Atlanta, Baltimore, Denver, Houston, Los Angeles,
Philadelphia, and Phoenix are also arresting and jailing huge numbers of blacks and
Latinos for marijuana possession.115 The widespread arrests of young blacks and
Latinos for marijuana possession and other petty offenses, such as truancy,
skateboarding, and playing loud music, have devastating consequences. A first-time
offender who pleads guilty to felony marijuana possession has a permanent criminal
record that can block him or her from getting a student loan, a job, a professional
license, food stamps, welfare benefits, or public housing.116 Even if they avoid
prison on a first offense, those who are arrested a second time risk a harsh
sentence for being a repeat offender.117 In addition to harsh sentencing, a lifetime
of genetic surveillance can now be added to the long list of collateral consequences
created by discriminatory arrests.
unfairly placing certain racial groups at greater risk of detection. Blacks and Latinos
have greater odds of being genetically profiled largely because of discriminatory
police practices.119 Moreover, people whose profiles are entered in DNA databases
become subject to a host of errors that can lead to being falsely accused of a crime.
As the federal government and a growing number of states extend the scope of DNA
collection to innocent people, they are imposing this unmerited risk primarily on
minorities. The problem is not only that all of these harms are placed
disproportionately on people of color, but also that the dangers of state databanks
are multiplied when applied to blacks and Latinos because these groups are already
at a disadvantage when they encounter the criminal justice system. Blacks and
Latinos have fewer resources than whites to challenge abuses and mistakes by law
enforcement officers and forensic analysts.120 They are stereotyped as criminals
before any DNA evidence is produced, making them more vulnerable to the myth of
DNA infallibility.121 The experience of being mistaken for a criminal is almost a rite
of passage for African-American men, writes journalist Brent Staples.122 One of
the main tests applied by a disturbing number of Americans to distinguish lawabiding from lawless people is their race. Many, if not most, Americans believe that
black people are prone to violence and make race-based assessments of the danger
posed by strangers they encounter.123 One of the most telling reflections of the
presumption of black criminality is biased reporting of crime by white victims and
eyewitnesses.124 Psychological studies show a substantially greater rate of error in
cross-racial identifications when the witness is white and the suspect is black.125
White witnesses disproportionately misidentify blacks because they expect to see
black criminals.126 According to Cornell legal scholar Sheri Lynn Johnson, This
expectation is so strong that whites may observe an interracial scene in which a
white person is the aggressor, yet remember the black person as the
aggressor.127 In numerous carefully staged experiments, social psychologists have
documented how peoples quick judgments about the criminal acts of others are
influenced by implicit biaspositive or negative preferences for a social category,
such as race or gender, based on unconscious stereotypes and attitudes that people
do not even realize they hold.128 Whites who are trying to figure out a blurred
object on a computer screen can identify it as a weapon faster after they are
exposed to a black face.129 Exposure to a white face has the opposite effect.130
Research participants playing a video game that simulates encounters with armed
and unarmed targets react faster and are more likely to shoot when the target is
black.131 The implicit association between blacks and crime is so powerful that it
supersedes reality; it predisposes whites to see black people as criminals. Most
wrongful convictions occurred after witnesses misidentified the defendant.132
Databanks filled with DNA extracted from guilty and innocent black men alike will
enforce and magnify the very stereotypes of black criminality that lead to so many
wrongful convictions in the first place. Collecting DNA from huge numbers of African
Americans who are merely arrested, with no proof of wrongdoing, embeds the
sordid myth of black criminality into state policy. As databanks swell with DNA from
black people who are arrested or convicted on petty offenses and as their relatives
also come under suspicion in states with familial searching, the government
effectively treats every black person in many communities as a criminal suspect. It
seemingly also legitimizes the myth that blacks have a genetic propensity to
however, these procedures often require arrestees to wait three or more years before even requesting
expungement and necessitate the help of a lawyer. As a result, the overwhelming majority of people arrested but
not convicted of any crime are unlikely even to try to get their samples destroyed. Tens of thousands of profiles
disproportionate inclusion of people of color in the databanks are made clear by the other papers in this series on
genetics and race. What is perhaps less clear is how our criminal justice system, which promises equal justice under
the law, can tolerate this injustice. This paper, after outlining the legal growth and transformation of DNA
databanks, examines how various steps in our criminal justice system create and magnify racial disparities, and
taking DNA
samples at various stages in this process may affect these disparities and the factors
that cause them. I use as my primary example California's system because it is one of the world's largest
how the law makes it nearly impossible to effectively address the problem. It also looks at how
criminal justice systems in one of the nation's most diverse states. It is also the system in which I have practiced
law for the last decade, and is representative of where DNA databanks throughout the country will likely be in the
next few years as more and more states and the federal government collect DNA from arrestees.[2] DNA databanks
comprise two distinct components: the actual biological samples and the computerized database of the profiles
Until recently, known samples were usually obtained by drawing blood, although now most states and the federal
The
government analyzes both forensic samples and known samples to create DNA profiles, which are
essentially a digitized description of 26 parts of the DNA molecule . The profiles are then
uploaded to the Combined DNA Index System ("CODIS"), a centralized, searchable law
enforcement database accessible to state, federal, and international law
enforcement agencies. CODIS was created by the FBI in 1994 after Congress authorized it to establish a
government primarily obtain samples by swabbing the inside of the person's cheek to collect skin cells.[3]
national DNA database to link existing state and local databanks. The biological samples themselves are retained
scene samples will be searched against it. When an arrestee profile exactly matches a crime-scene
profile, CODIS automatically notifies agencies that provided the sample. Then that agency will usually provide the
DNA databanks
have expanded the range of people
subject to having their DNA forcibly seized, analyzed, and the resulting profile
databanked. California's databank is a good example of this. It was originally conceived as a way to connect
identity of the arrestee to the agency with jurisdiction over the crime so that it can follow up.
have grown exponentially in the last decade as new laws
people convicted of serious violent crimes with other such crimes in which DNA evidence is most useful. The
original 1989 DNA-collection law established a databank and required people convicted of murder or a felony sex
offense to provide DNA samples before they were released from custody.[4] The state department of justice had the
authority to analyze these samples and include the resulting analysis in the new statewide databank.[5] From
today's perspective, this program seems quite limited: the only people subject to having their DNA databanked had
been convicted of very serious crimes, either by pleading guilty or after the charges had been proved beyond all
reasonable doubt to a jury. But the law soon began to expand to include more people. The first steps were modest:
in the late 1990s, new crimes were added to the list of qualifying offenses, and the law was amended to require that
samples be taken immediately after conviction, rather than just before release. The latter change was enacted as
the focus shifted from preventing new crimes to solving old crimes. In 2004, California
voters enacted
Proposition 69, drastically expanding the database . The two biggest changes were that, as of
November 2004, every person convicted of any felony - which can include simple drug
possession, shoplifting, or even intentionally writing a check without sufficient
funds to cover it - has had to provide DNA samples. And, as of January 1, 2009, every person
arrested for a felony in California must give a DNA sample. Prop. 69 thus radically changed the database from one
comprising profiles of individuals convicted of violent felonies to one that includes profiles from suspected
This huge increase is not distributed equitably among all people. AfricanAmericans comprise 6.7% of California's population, but 21.5% of those arrested for
felonies in the state.[6] Although, as discussed below, the possibility of race-based decision-making at all levels
shoplifters.
of the criminal justice system makes it impossible to know whether changing from a database of people convicted
of felonies to one including everybody arrested for felonies will result in an increase in the proportion of people of
color in the database it will clearly result in a significant increase in the absolute number of minorities included.
Racial disparities fluctuate depending on the stage of the criminal proceeding from the high-level initial decision to
make certain acts criminal, to a police officer's decision to contact or arrest an individual, to the decisions made by
prosecutors, judges, jurors, and defense lawyers. Thus, the stage at which DNA samples are taken will affect the
racial disparities in the databank, albeit in unpredictable ways. The first and broadest stage at which racial
disparities are introduced into the criminal justice system is at the legislative level, where crimes are defined and
classified. The basic question is, of course what conduct is considered criminal: why is a person who possesses
drugs subject to criminal sanctions while a business that puts its workers or consumers at risk with dangerous or
unsanitary facilities subject only to civil sanctions? Even beyond that basic issue, our criminal justice system treats
very similar conduct differently in ways that create racial disparities. The most notorious example of this is the
crack versus powder forms of cocaine disparity in the federal system, which for years punished people convicted of
crack cocaine offenses (well over 80% of whom are African- American) much more severely than powder cocaine
offenders (72% of whom are white or Hispanic).[7] The legislative establishment of "drug-free zones," often around
schools, parks, or public-housing projects, can also have racially disparate effects.[8] These laws mean that people
who live and commit drug crimes in dense urban areas, where few locations are not close to a school or park, will
be punished more harshly for the same conduct than are their suburban or rural counterparts. Because urban areas
usually have higher proportions of people of color, these harsher punishments will reinforce racial disparities.
Laws like these interact with seemingly race-neutral DNA collection laws to produce
great disparities in the databank. A databank that includes all persons convicted of
felonies will include every person - primarily people of color - convicted of
possessing cocaine or heroin, no matter how small the amount; but it will not
contain samples from people - primarily white - convicted of minor
methamphetamine offenses that were prosecuted as misdemeanors . Conversely, a
databank that includes only violent crimes or sex crimes - as many originally did - should result in fewer disparities
than an all-felony database for the reasons just described. Excluding non-violent crimes is reasonable since DNA
go completely unsolved, with the police never even identifying a suspect. If DNA databanks work as they are
intended, they will identify suspects for at least some - perhaps many - of these crimes. But
a racially skewed
databank will produce racially skewed results; because racial disparities in the
criminal-justice system have led to the inclusion of a disproportionate number of
profiles of African-Americans in CODIS, the databank will return a disproportionate
number of matches to African-American suspects . In contrast, crimes committed by members of
groups that are underrepresented in CODIS will escape detection, particularly as the police spend an increasing
amount of their limited time and resources focusing on cases where they have found a DNA match. The U.S.
Constitution, as interpreted by the courts, does not prohibit this shift, regardless of the racial disparities it
intent as awareness of consequences. It implies that the decision-maker, in this case a state legislature, selected or
reaffirmed a particular course of action at least in part because of, not merely in spite of, its adverse effects upon
an identifiable group." If the governmental body would have acted the same way even without the discriminatory
intent, the law stands. The United States Court of Appeals has applied these same principles to reject an argument
that the racial disparities in the federal DNA database made it unconstitutional.[9] No matter how disparate the
impact of the database, without indications that Congress enacted it in order to adversely affect African-Americans,
the challenge failed. A second policy-level set of decisions also creates racial disparities: the allocation of lawenforcement resources. The clearest big-picture example of this is the so-called "war on drugs," which is largely
responsible for filling our prisons with men and women of color over the last 30 years.[10] A war on securities fraud
or tax evasion would result in the arrest and prosecution of a very different demographic. Yet resources for
combating white-collar crimes have been cut, despite evidence that violations are common and devastating to our
society, as evidenced by the current global impacts of finance fraud. On a smaller scale, police decisions to conduct
buy-bust operations in specific neighborhoods - where undercover officers attempt to buy drugs from people on the
street and then arrest anybody who sells them the drugs - mean that the police choose who will be targeted based
on what neighborhood is chosen for the operation. These operations usually occur in poor, urban neighborhoods
with large minority populations. Racial disparities also enter through racial profiling by individual officers. Studies
have shown that some mixture of unconscious racism, conscious racism, and the middle-ground use of criminal
profiles often leads law enforcement to focus its attention and authority on people of color. This can include
everything from discriminatory enforcement of traffic laws to detainment and arrests of people of color without
sufficient individualized suspicion. As with challenges to legislative actions, challenges to racial profiling under the
Constitution are extremely difficult because of the need to show discriminatory intent. The difficulty is magnified
because the law gives police officers substantial discretion as to who they approach, stop, question, or search. The
Supreme Court has held that the police may lawfully make pretextual stops - for example, singling out one speeding
driver among many because the officer has a hunch that they may be carrying drugs. This means that, although the
police may not stop a person based solely on race, there are many explanations an officer can give if called upon to
explain a stop: the driver or passenger's nervous glance, reduced speed upon seeing the officer, a pedestrian
wearing a heavy coat on a warm day, and so on. None of this behavior alone would justify the stop of a car, but
such seemingly innocent actions are enough to justify the officer's decision to stop this particular car for driving a
few miles per hour over the speed limit while ignoring all the others that did the same, or to stop a particular
individual for jaywalking while ignoring similar violations. Even if a court determines that an officer did make a stop
based on nothing more than the driver's race, the only remedy is the possibility of a civil suit against the officer.
Unless serious harm was done, this is highly unlikely to occur, so it is not a significant deterrent to such police
abuse of power. Arrestee sampling adds another incentive for police officers to make questionable or outright illegal
arrests. Whether or not the arrest leads directly to charges being filed, the arrestee's DNA profile will automatically
Because of the
barriers to having DNA samples removed, few arrestees will be able to have their
samples and profiles expunged, thus allowing a single law enforcement officer the
power to place people under lifetime genetic surveillance. The low level of proof required
be included in the database and run against all crime-scene evidence, now and in the future.
to make an arrest, combined with the difficulties of preventing arrests that are illegal for lack of proof or for
genome. ELSI noted that the Americans with Disabilities Act of 1990 is the best
source of protection against genetic discrimination, but is still weakened by the
simple flaw that it never explicitly provides for discrimination based on genetic
testing. The problem with the ADA is it only specifically prevents discrimination
against expressed genetic conditions, not those merely represented in a persons
DNA. This makes the law almost useless in combating employer discrimination,
which focuses on sifting out workers with the potential for problems.
genetic predispositions will be secure, or the country will create a potential for
tragedy.
issue: Whatever, in connection with my professional practice, or not in connection with it, I may see or hear in the
lives of men which ought not to be spoken abroad I will not divulge, as reckoning that all such should be kept
secret. While I continue to keep this oath unviolated, may it be granted to me to enjoy life and the practice of the
art, respected by all men at all times, but should I trespass and violate this oath, may the reverse be my lot.
Patient confidentiality, then, is not only a time-honored principle of medical practice, but indeed, a strong covenant
of the ethics of Hippocrates, inherent to the honorable medical profession. When President
release his medical records to the public during the 1996 re-election campaign, he
as patients, we will all have sensitive medical information compiled. Yes, we will all have medical charts compiled
documenting details of our medical history, which should only be inspected by medical personnel to whom explicit
written consent has been given for continuity of medical care, or made accessible to third parties (including the
government) upon written authorization from the patient - each time information is requested, and delineating the
specific need for the disclosure, as well as outlining the manner in which the information will be used.(1) This may
1993-1994 health care debate - Hillary Clinton wanted to establish a Health Security Card with an encoded
computer chip capable of containing 60 pages of potentially prejudicial information (i.e., sexually transmitted
diseases, drug and alcohol abuse, depression, etc.) and sensitive personal data (i.e., living arrangements,
impotence, sexual practices, etc.) on every American - a federal dossier - from personal medical records to
tabulations of individual health care costs (i.e., charges incurred by the government as a result of the individual
acting as a "consumer of finite and scarce health care resources"). As U.S. Supreme Court Justice William O. Douglas
stated in 1996: "Once electronic surveillance...is added to the techniques of snooping that this sophisticated age
has developed, we face the stark reality that the walls of privacy have broken down and all the tools of the police
increasingly as public property and considered "within the public domain" by many government bureaucrats! The
administrative simplification provisions of the Kassebaum-Kennedy law (1996) and the various administrative edicts
from the offices of the Department of Health and Human Services (HHS) and the Health Care Financing
Administration (HCFA) militate, ever more insidiously, for the collection and the electronic transfer of records
(including mental health records), and medical data generated by every patient-doctor encounter. Ironically, the
Kassebaum-Kennedy law* requires HHS Secretary Donna Shalala to make recommendations for preserving patient
confidentiality in medical records. Instead, Sec. Shalala contends that "individuals' claims to privacy must be
balanced by their public responsibility to contribute to the common good, through use of their information for
giving people greater control over what is done with their tissue (Andrews 1986).
There could be greater limits on access to DNA information: Vermont legislation, for
example, includes language in a databanking bill to prohibit the use of genetic
information as a basis for employment and insurance decisions. Though the practice
of testing and banking DNA is extending to a widening range of peoplefrom
soldiers who go to battle to chaplains assistants, from violent to nonviolent felons,
from immigrant families to foreign adopteesthere has been little public concern
about the practice. The possibilities of error are deflected by faith in science and,
especially, the promise of genetics. Potential abuses of DNA data are deflected by
perceptions that surveillance pertains to othersthe soldier, the criminal or the
illegal immigrantand a belief that DNA identification is an efficient means to
maintain social order. Moreover, Americans these days have few expectations
of privacy, accepting surveillance in many spheres. Shoppers accept television
surveillance in department stores, strollers accept camera surveillance in public
parks (Nelkin 1995). The dossier society that Laudon and Rule predicted years ago
has crept up on us; facilitated by the ability to gather, store, and access information
not just about finances, credit rating, or consumer preferences, but about the
body, identity, and health. In 1972, a legal scholar wrote that the social security
numbers assigned to us at birth have become a leash around our necks, subjecting
us to constant monitoring and making credible the fear of the fabled womb-to-tomb
dossier (Miller 1972). Could DNA identifiers eventually replace social security
numbers, requiring every person to have DNA on file? Today, according to Janet
Hoeffel (1990), It is not merely paranoia to imagine the incremental steps the
current government would take that would lead from a data bank with DNA profiles
on criminals to a data bank with profiles on each of us. Indeed, molecular biologist
Leroy Hood has predicted that within 20 years all Americans will carry a credit card
type plastic stripe that contains computer readouts of their personal genomes: Your
entire genome and medical history will be on a credit card (Hood 1996)
A2 Politics
Link Turn
The plan is popular tech companies will push for the plan and
it has widespread support
Young 14 (Kerry Young, Roll Call Staff, graduate of Tulane University)(Tech Firms
Ask Congress to Redefine Medical Privacy Rules, Sept. 8, 2014, Roll Call,
http://www.rollcall.com/news/tech_firms_ask_congress_to_redefine_medical_privacy_
rules-236069-1.html?pg=3&dczone=policy)//ASMITH
Tech firms, including Amazon.com Inc., are asking Congress to redefine the rules on medical
privacy, saying the risks of potential disclosure should be weighed again against the
anticipated benefits of wider sharing and easier access to crucial health data.
Executives of tech companies and health organizations have told the House Energy and Commerce Committee in
the patients, are constructing a health care system that they and we cannot afford, and were putting the balance in
the wrong spot, Joseph M. Smith, a former Johnson & Johnson medical technology executive who has been involved
with venture capital projects, told the committee in June. In Congress view of trying to protect everyone from that
information, we may be protecting them to death. Much of what health researchers and executives seek involves
more clear guidance on what are known as HIPAA privacy regulations. The name reflects their genesis as an add-on
provision to the Health Insurance Portability and Accountability Act of 1996 (PL 104-191). Yet, these calls for a new
look at HIPAA are coming at a time of marked concern about the sanctity of consumers online accounts health
emotional state of about 690,000 of Facebook users. Thats likely to heighten peoples concern about how data in
general is shared online, especially medical records, said Justin Brookman, director for consumer privacy at the
Center for Democracy & Technology. By and large, they dont expect that they are going to be guinea pigs, he
In May, HHS
reported a record HIPAA settlement of $4.8 million in a case involving New York
Presbyterian Hospital and Columbia University and medical records for about 6,800
people, including laboratory results . The hospital and Columbia learned of the security lapse when the
said. When we are talking about health information, people feel even more strongly about it.
partner of a deceased patient found that persons health information on the Internet. New York Presbyterian and the
university notified HHS of the security lapse, and theres been no indication any of that information was ever
the limitations that imposes on the value that they could create, they demure, said Smith, now the chief medical
and science officer at the nonprofit West Health Institute, noting this has an effect on the United States health
system at large. The innovative spirit falters when it encounters that immovable object that we currently call
Large companies also are looking for changes in HIPAA. Paul Misener,
Amazons vice president for global public policy, in July told Energy and Commerce
that current rules make it difficult to negotiate contracts for cloud computing
services. Congress should direct HHS to provide more clear guidance on the HIPAA requirements for cloud
HIPAA, he said.
computing when the host firm has no way of accessing the encrypted data that would be stored, he said. The
current interpretation impedes health-care delivery entities from leveraging cloud services by causing the parties
to negotiate a business associate agreement in which virtually all of the terms are inapplicable because the cloud
those barriers, allowing for greater innovation and advancement, all the while protecting the privacy of our patients.
A look at HIPAA has been part of what Upton calls his 21st Century Cures Initiative, which has drawn federal
officials, including top Food and Drug Administration regulators, to sit and publicly hash out ideas with company
executives and patient advocates. Uptons lead partner in the project is Diana DeGette, D-Colo., and the backers so
far include two Democrats competing for their partys top spot on Energy and Commerce, Frank Pallone Jr. of New
Jersey and Anna G. Eshoo of California. In May, HHS reported a record HIPAA settlement of $4.8 million in a case
involving New York Presbyterian Hospital and Columbia University and medical records for about 6,800 people,
including laboratory results. The hospital and Columbia learned of the security lapse when the partner of a
deceased patient found that persons health information on the Internet. New York Presbyterian and the university
notified HHS of the security lapse, and theres been no indication any of that information was ever accessed or used
The
complexity of HIPAA regulations and the threat of inadvertently triggering fines keep
many small companies from venturing into projects that would involve using
medical data, Smith said at the Energy and Commerce meeting in June. Once they understand the HIPAA
inappropriately. Still, HHS found their approach to guarding data lacking and levied the record fine.
penalties and the machinery involved and the limitations that imposes on the value that they could create, they
demure, said Smith, now the chief medical and science officer at the nonprofit West Health Institute, noting this
has an effect on the United States health system at large. The innovative spirit falters when it encounters that
immovable object that we currently call HIPAA, he said. Large companies also are looking for changes in HIPAA.
Paul Misener, Amazons vice president for global public policy, in July told Energy and Commerce that current rules
make it difficult to negotiate contracts for cloud computing services. Congress should direct HHS to provide more
clear guidance on the HIPAA requirements for cloud computing when the host firm has no way of accessing the
encrypted data that would be stored, he said. The current interpretation impedes health-care delivery entities from
leveraging cloud services by causing the parties to negotiate a business associate agreement in which virtually all
of the terms are inapplicable because the cloud services provider does not have access to health information,
Misener said These complaints about HIPAA have caught the attention of a powerful lawmaker who is intent on
putting forth broad bipartisan health legislation in the next session of Congress. We have heard on numerous
occasions that there is a wealth of health data available, but there are barriers to using it, House Energy and
Commerce Chairman Fred Upton, R-Mich., told CQ Roll Call in an email last week.
We are exploring
opportunities to break down those barriers, allowing for greater innovation and
advancement, all the while protecting the privacy of our patients. A look at
HIPAA has been part of what Upton calls his 21st Century Cures Initiative, which has
drawn federal officials, including top Food and Drug Administration regulators, to sit
and publicly hash out ideas with company executives and patient advocates. Uptons
lead partner in the project is Diana DeGette, D-Colo., and the backers so far include two Democrats competing for
their partys top spot on Energy and Commerce, Frank Pallone Jr. of New Jersey and Anna G. Eshoo of California.
A2 Bioterrorism DA
No Link
Changing health policies keycurrent policies are more
ineffective
Mauroni 11 (Al, Director of the U.S. Air Force Counterproliferation Center, GAUGING THE RISK
FROM BIOTERRORISM http://warontherocks.com/2014/01/gauging-the-risk-from-bioterrorism/3/ 1/6/15 JM)
The focus of the federal government has been on coordinating a medical response
to biological incidents, given that in the event of certain contagious diseases, the
impact may be global and fast moving. As a result of policy that addresses both
natural disease outbreaks and bioterrorism, there are numerous government
agencies involved. Others have talked about the need to work public health with
national security to address shared health security concerns. However, any focus on
bioterrorism is lost in the greater concern about natural disease outbreaks. The
challenge is one of resources and priorities between public health threats and
deliberate biological threats. The public health community has a prioritized list of
global infectious diseases. Diarrhea, malaria, dengue fever, and seasonal influenza
top the list, followed by strains of hepatitis, HIV/AIDS, typhoid, and meningitis.
Anthrax and smallpox are not listed in the top 30 infectious diseases because there
are not regular outbreaks of those diseases and vaccines exist for both. Among the
60-70 infectious diseases that are tracked by the public health community, about
ten constitute military biological warfare (BW) or bioterrorism threats. If
the public health community is leading the medical response to bioterrorism, we
need to understand that it isnt focused on deliberately released BW threats.
A 2011 CRS report on federal efforts to address the threat of bioterrorism makes
this point. Although there is clear presidential and congressional attention on
bioterrorism, the report notes criticism on the lack of metrics and unclear goals
across the interagency, leading to ineffective efforts. The risk assessment
process does not adequately address the intent and capabilities of deliberate actors.
National bio-surveillance is challenged by expensive environmental sensors. The
investment of billions of dollars into medical countermeasures for BW threats has
been slow to produce results, and has been criticized by those who would rather see
funds invested against public health threats. The CRS report fails to address the
public health community issues overshadowing bioterrorism concerns, but one
should be able to read this between the lines. It may be correct that a response to a
biological incident should not be determined by the threat source (Mother Nature
versus a deliberate actor), but certainly it makes a difference to those federal
agencies responsible to prevent those threat sources from acting and to protect
specific populations (military service members versus the general population).
Defending fit military troops against BW agents on the battlefield (bio-defense) is
very different from protecting young and old civilians from biological hazards
dispersed by extremists (bio-security), which is distinct from protecting the general
public from natural disease outbreaks (bio-safety). Currently, there is no clarity in
national policy to reflect these distinct roles. It is clear that the federal government
has been tasked to defend the public against the threat of bioterrorism. Numerous
government agencies are involved, and given the breadth and depth of this subject,
it is difficult (but not impossible) to address all aspects and programs associated
with the subject. Public health threats are more probable and affect more people
than bioterrorism threats do. But, attempts to get a two for one by tasking
the public health system to address bioterrorism in a holistic all-hazards
approach will fail, resulting in a loss of focus on bioterrorism. The future
challenges of infectious diseases and new biotechnology will continue to require a
hard focus on how we conduct bio-defense, bio-safety, and bio-security. As DoD and
the interagency comes together to develop policies and strategies for countering
biological threats, we need to ensure we are asking the right questions and not
shortcutting the system in favor of quick fixes that may fail to produce viable
results. Above all, we need to abandon rhetorical statements about how the threat
is real and how a terrorist WMD incident will happen within the next five years.
These statements arent resulting in increased resources or attention. Its not 2001
anymore. Its time for relevant analysis against tomorrows challenges.
No Impact
No risk of a bioterror attackits too technically difficult
PressTV 15 (PressTV, reporting source from the UK, Ebola can be weaponized for bioterrorism
in UK: Study page 3 http://www.presstv.com/Detail/2015/02/01/395598/Weaponized-Ebola-could-be-used-in-UK
2/1/15 JM)
The Ebola virus could be weaponized to kill thousands of people in Britain, UK germ
warfare experts have warned. According to an investigation carried out at the
Defense Science and Technology Laboratory at Porton Down in Wiltshire, there are
three scenarios in which the virus could be weaponized for use in the UK, British
media reports. The study was conducted following a request by the government for
guidance on the feasibility and potential impact of a non-state actor exploiting the
Ebola outbreak in West Africa for bioterrorism, The Mirror reported on Saturday.
Following the assessment which was carried out last October, the British
government called for the screening of passengers at Heathrow airport. The results
of the study have emerged in a redacted version edited by the Ministry of Defense
(MoD) and show it would difficult for Ebola to be weaponized by terrorists without
the backing of a government, implying the possibility of the bioterrorist act. This
scenario would be logistically and technically challenging for a nonstate group, read part of the redacted document about the first scenario. There
are practical issues with such a scenario that of themselves are often not
insurmountable but taken together add enormously to the complexity of
successfully undertaking this attack, The Mirror excerpted in relation to the second
scenario. Regarding the third scenario the report said it would be very technically
challenging. The report was redacted by the MoD because it contains details whose
disclosure would prejudice the capability and effectiveness of our forces and safety
of UK citizens. Ebola is a form of hemorrhagic fever, whose symptoms are diarrhea,
vomiting, and bleeding. The virus spreads through direct contact with infected
blood, feces, or sweat. It can be also spread through sexual contact or the
unprotected handling of contaminated corpses.
These could prevent potential harm from either the theft or misuse of
these substances, which are used in biofuels, food, and medicines.
Researchers at the Universities of Edinburgh and NYU Langone Medical Center have
developed two types of molecular switch that work in yeast, a commonly used
model organism. The team inserted a second set of on and off switches to target
another vital gene, to mitigate the risk that changes in the live yeast might enable it
to circumvent chemical control. The study, published in Proceedings of the National
Academy of Sciences, was funded by the US Defense Advanced Research Projects
Agency and the Biotechnology and Biological Sciences Research Council. Dr Yihzi
Patrick Cai of the University of Edinburgh's School of Biological Sciences, who jointly
led the research, said: "Synthetic biology is a fast-developing field with huge
potential to benefit society, but we need to be mindful about its potential risks and
take active steps to limit them in our biological designs. With these genetic safety
switches, we can contain engineered organisms with a special combination of small
molecules."
what kind of agent they would like to use in a bioterror attack. This is one part of
the recipe which can be modified, but the other ingredients will be standard for all
types of attacks. The recent spread of the deadly Ebola virus will be the agent of
choice for this bomb. Ebola is a virus which is passed to humans through contact
with infected animals. The spread of the virus from person-to-person is brought
about through blood and bodily fluids, as well as exposure to a contaminated
environment. An infected live host with Ebola would need to be maintained in a
human or animal only a few animals are able to be used as hosts, such as
primates, bats, and forest antelope. Although Ebola infection of animals through
aerosol particles can be effective, it has not successfully been transferred with this
method to humans (Manoj Karwa, Brian Currie and Vladimir Kvetan, Bioterrorism:
Preparing for the impossible or the improbable, Critical Care Medicine 33, No. 1,
January 2005: 75-95). 1 Bucket of Resources and Money In order to develop a
biological weapon, a substantial amount of material and money is required.
Investment is needed from the very outset taking into account membership size
and capabilities of a terrorist group, financial assets of a group, and making sure
territory and proper infrastructure is available for the biological agent. For a
successful bomb to be created, a group must think about the resources they will
need for each stage of the baking process, such as weapons production, potential
testing phases, and logistics, such as transportation and communications
technologies (Victor H. Asal, Gary A. Ackerman and R. Karl Rethemeyer,
Connections Can Be Toxic: Terrorist Organizational Factors and the Pursuit of CBRN
Terrorism, National Consortium for the Study of Terrorism and Responses to
Terrorism, 2006). Resources needed for an Ebola Bomb will most likely need to be
imported from the outside, and a group must determine the feasibility of acquiring
the materials and technologies needed for the bomb (Jean Pascal Zanders,
Assessing the risk of chemical and biological weapons proliferation to terrorists,
The Nonproliferation Review, Fall 1999: 17-34). A surplus of money would also be a
smart idea in case technical difficulties arise. 5 Cups of Expertise With all the correct
resources and necessary amount of monetary support, the recipe will require the
right kind of know-how. For an operation like this, a terrorist group should have
members with high levels of education and training in science, engineering, and
technological development, to deal with highly virulent agents, and for successful
weaponisation (Zanders). A group may need to be integrated into knowledge flows
and institutions, or be able to recruit members to their cause with this specific
expertise (Asal, Ackerman and Rethemeyer). Knowledge and expertise is required to
create the correct strain, handling the agent, growing the agent with the desired
characteristics, and maintaining the agent. Taking Ebola specifically requires
synthesising proteins which make it infectious, and becomes a task that is difficult
and unlikely to succeed (Amanda M. Teckma, The Bioterrorist Threat of Ebola in
East Africa and Implications for Global Health and Security, Global Policy Essay,
May 2013). If Ebola is successfully created in the kitchen, it is not itself a biological
weapon an expert will be required to transform the virus into a workable
mechanism for dissemination. A Teaspoon of Risk The decision to use biological
weapons for an attack is in itself extremely risky. There is a risk that
bioterrorism could cause dissenting views among followers, and that
public approval and opinion may channel the way a group operates. After
This apocalyptic religious organisation in Japan managed to release sarin gas inside
a Tokyo subway, killing a dozen people, and injuring 50. However, even with money
and resources, they failed to effectively weaponise the chemical. Factors which led
to their failure included internal secrecy and breakdown in communication; selecting
members only solely dedicated to their cause to work on the weapons, ultimately
employing unskilled people to operate and maintain the project, causing accidents
and leaks (Zanders). Aum Shinrikyos attempt to disseminate botulinum toxin into
Tokyo using a truck with a compressor and vents, did not work because they had not
acquired an infectious strain (Sharon Begley, Unmasking Bioterror, Newsweek,
13.03.2010; Chronology of Aum Shinrikyos CBW Activities, Monterey Institute of
International Studies, 2001). Finally, a major obstacle to successfully disseminating
Ebola, is because this virus requires a specific environment in order to thrive.
Weather conditions can be unpredictable, and Ebola particularly needs high
temperatures and humidity to remain effective. Obviously, this Ebola Bomb has
not come close to containing the right requirements needed to explode. Looking
back historically, pathogens, and all kinds of toxins have been used as tools in
sabotage and assassinations since the beginning of time. Now, it would be silly to
say this recipe will never work there will always be a possibility that Ebola or other
viruses may be used as biological weapons in the future. However, the likelihood of
its development and use by a terrorist group is quite improbable. Mentioning Aum
Shinrikyo again, they are an organisation which at the time, had a war chest of more
than $300 million, with six laboratories and a handful of biologists, in the end
having insurmountable difficulties with the weaponisation and dissemination
processes, and killing a dozen people (Begley). There is a greater amount of
knowledge and technology available in our day and age than in 1995 with the Aum
Shinrikyo attacks, but it is still unlikely that this will be the weapon of choice.
Examining state biological weapons programmes, Soviet Russia had almost 60,000
personnel employed in their weapons development, with only about 100 people that
actually knew how to take an agent through the full production process. In the
United States, at Fort Detrick, there were 250 buildings with 3,000 personnel, and it
took them a while to weaponise a single agent, such as botulinum (Manoj Karwa,
Brian Currie and Vladimir Kvetan). Nowadays, the narrative has assumed a
worst case scenario analysis, and subsequently narrowed down bioterrorism to a
single threat prognosis. There is little distinction made between what is
conceivable and possible, and what is likely in terms of bioterrorism.
Anything can be conceived as a terrorist threat, but what is the reality? The Ebola
Bomb is not a danger. The likelihood of a bioterrorist attack remains highly
unlikely (Teckman). The focus should be on preventing natural pandemics of human
disease, such as tuberculosis, SARS, AIDS and influenza emphasis placed on how
we can cure diseases, and how medical training could be improved to contain, and
avoid viruses such as Ebola altogether. Resources are being pumped into
biodefence in the security as well as the medical sector, but preparedness and
investment in bioterrorism needs to be in proportion to actual threats, otherwise,
funds are diverted away from much needed public health programmes: Diversion of
resources from public health in the United States include diversion of funds needed
for protection against other chemical risks spills, leaks and explosives and
infectious diseases. Each year in the United States there are 60,000 chemical spills,
leaks and explosions, of which 8,000 are classified as serious, with over 300
deaths. There are 76 million episodes of food-borne illness, leading to 325,000
hospitalisations and 5,000 deaths, most of which could be prevented. There are
110,000 hospitalisations and 20,000 deaths from influenza, a largely preventable
illness, and there are 40,000 new cases and 10,000 deaths from HIV/AIDS. Diversion
of resources for public health outside the US reduce the resources that can help
provide protection against diseases rooted in poverty, ignorance and absence of
services. Victor W Sidel, Bioterrorism in the United States: A balanced
assessment of risk and response, Medicine, Conflict and Survival 19, No. 4, 2003:
318-325. The effectiveness of biological weapons has never been clearly shown, the
numbers of casualties have been small and it is likely that hoaxes and false alarms
in the future will continue to outnumber real events and create disruptive hysteria
(Manoj Karwa, Brian Currie and Vladimir Kvetan). Emphasis needs to be back on
medical research, as well as social science investigations into the roots of why
terrorist groups would even want to pursue biological weapons, and the lengths
they would go to use them. Let this be an avenue for further pondering and
exploring, the realities of bioterrorism.
Republicans and Democrats agreeing on industrial policy to save the auto industry?
Unthinkable. Republicans and Democrats agreeing on industrial policy to promote
clean energy companies? Absurd. But Republicans and Democrats agreeing on
industrial policy for the pharmaceutical industry to develop drugs and vaccines to
combat bioterror agents? It not only passed by unanimous consent in the Senate
earlier this month, it will likely be approved by the conference committee that will
soon consider the $4.5 billion Pandemic and All-Hazards Preparedness Act (PAHPA),
the reauthorization of the 2006 law coordinating the nations decade-long effort to
prepare for a terrorist biological warfare attack. Despite the reality that the only
bioterrorist attack that has ever taken place on U.S. soil (one week after 9/11) was
launched by a rogue U.S. scientist who had worked in the Cold War biological
weapons program and was one of the worlds few experts in weaponizing anthrax,
the nation has spent an estimated $66 billion in the past decade preparing for the
next assault. Tens of billions of dollars have been poured into basic science and
applied research to develop vaccines and drugs to combat diseases like anthrax,
smallpox (a disease that no longer occurs naturally on earth), botulism and
plague. Billions more has gone into beefing up the public health systems ability to
respond to emergency health crises. Hospitals have been paid to expand their
capacity to respond to surges of patients stricken by a pandemic or a terrorist
attack. These nationwide grant programs have helped build a broad base of political
support for the programs. And now, in the reauthorization bill sponsored by Sen.
Richard Burr, R-N.C., Congress has earmarked $50 million for a strategic investor
venture capital fund to invest in start-up biotechnology companies that are
developing drugs and vaccines that combat bioterror pathogens. Structured as a
public-private partnership outside the government, the goal is to bring more private
funding into the hunt for new countermeasure products. It will be added to the
$450 million a year the government already doles out in grants to companies
through the Biomedical Advanced Research and Development Authority (BARDA)
and the $2.9 billion earmarked over the next five years for procurement of new
drugs and vaccines for government stockpiles. As the votes in Congress attest (the
House version of the bill also passed on a voice vote), the massive commitment to
biodefense spending in the 2000s has won broad support from the nations research
and scientific establishment. The National Institute for Allergies and Infectious
Diseases (NIAID), headed since the 1980s by Anthony Fauci, receives over $1 billion
a year for bioterror-oriented scientific research. The National Cancer Institute, by
comparison, receives about $5 billion to look for cures for the tumors that kill over a
half million Americans annually. Officials at NIAID and legislators on Capitol Hill say
the massive investment in preventing and curing diseases that rarely if ever occur
naturally is providing a huge boost to the moribund U.S. effort to develop new
antibiotics to fight the drug resistant bacterial strains that are causing tens of
thousands of deaths annually in U.S. hospitals. The goal of this basic research is to
lay the groundwork for developing broad-spectrum antibiotics and antiviralsdrugs
that can prevent or treat diseases caused by multiple types of bacteria or viruses
and multi-platform technologies that potentially could be used to more efficiently
develop vaccines against a variety of infectious agents, the agency says on its
website. But some scientists complain that the anti-bioterror research agenda has
detracted from research that specifically targets infectious diseases that are already
killing people, both in the U.S. and in the developing world. Im sure other
programs are reduced because of the money weve put into this, said Peter Agre,
director of the Johns Hopkins Malaria Research Institute and winner of the 2003
Nobel Prize in chemistry for his work on cell membrane channels. Were seeing
scientists who have to prematurely end their careers because they cant get grants.
Is this bioterror the most important and cost-effective research being done on
infectious diseases? I dont think it is. However, the leaders of the Infectious
Diseases Society of America, which represents the medical specialists and
researchers in the field, back the program because it creates a stream of funding
that otherwise wouldnt exist. While we understand the nations current fiscal
pressures, we believe that greater investment in key areas is crucial to protect the
American people and others from biothreats, pandemics and emerging infections,
Thomas Slama, the groups president, wrote in a letter to House and Senate leaders
last month. Beefed up biodefense spending also gets championed by the movement
to broaden the pipeline of new antibiotics being developed by the pharmaceutical
industry. Their argument is the same as NIAIDs: a new drug that fights an anthrax
infection could also be used to treat the drug-resistant hospital-acquired infections
that kill tens of thousands of Americans a year. BARDA has pumped $200 million
into critical developmental molecules that would either be dead or much less
further along if BARDA wasnt around, said Brad Spellberg, a professor of medicine
at the Los Angeles Biomedical Research Institute. He also consults for numerous
Topicality
A2 Surveillance
We meet- health surveillance has intent and uses technology
Rubel 12 (Alan Rubel. Ph.D., Department of Philosophy, University of WisconsinMadison; J.D., magna cum laude, University of Wisconsin Law School Assistant
Professor. Justifying Public Health Surveillance: Basic Interests, Unreasonable
Exercise, and Privacy. 2012. P. 2-3.
https://kiej.georgetown.edu/home_files/22.1.rubel.pdf)//EMerz
Public health surveillance is the ongoing systematic collection, analysis, and
dissemination of health data to those who need to know (Thacker, Stroup, and
Dicker 2003, p. 224). Its scope is wide, both in its purposes and its methods.
Information gathered in public health surveillance is used to assess public health
status, to define public health priorities, to evaluate programs, and to conduct
research (Thacker 1994, p. 8). Surveillance is used in detecting epidemics,
understanding the natural history of diseases, determining the magnitude and
geographic distribution of problems, evaluating control and prevention efforts,
planning and priority setting, detecting changes to health practices, and stimulating
research (Thacker, Stroup, and Dicker 2003, pp. 814; Thacker 1994, pp. 824; CDC
2011a). Surveillance systems collect information in numerous ways. They may use
mundane sources such as vital statistics (e.g., birth and death records), surveys,
and environmental data regarding risk factors (e.g., air-monitoring data gathered
under the Clean Air Act and hazardous materials spills reported to the federal
Department of Transportation) (Thacker, Stroup, and Dicker 2003, p. 231). There are
also sentinel surveillance programs, which monitor key health events. For example,
occupational health conditions are monitored in the United States by key health
care providers participating in the Sentinel Event Notification System for
Occupational Risks (SENSOR) (Stroup, Zack, and Wharton 1994, pp. 4546). The
recognition that behavior is a crucial aspect of health has led public health agencies
to gather information regarding the use of alcohol, cigarettes, and drugs, the use of
safety devices such as seatbelts and bicycle helmets, and persons eating, exercise,
and sexual habits (Gostin 2008, p. 292). A relatively novel approach, which may
prove useful for early detection of outbreaks or bioterrorism, is syndromic
surveillance. This involves collecting and analyzing statistical data on health trends
such as symptoms reported by people seeking care in emergency rooms or other
health care settingsor even sales of flu medicines (Stoto, Schonlau, and Mariano
2004).
relationship and the continued development of this nations health care system . 17 As
an editorial in the Washington Post concluded: Of all the threats posed to personal privacy by
new information technologies, the threat to the privacy of medical records is by far
the most urgent. 18 In the past few years nearly every witness who has testified before
Congress on this issue has stated that a comprehensive federal privacy law is
critical to preserving peoples trust in their doctors and in the health care system.
Every report on health privacy issued recently concludes that a federal health
privacy law is necessary to plug existing gaps in law, policy, and practice. There
also is strong public support for a comprehensive federal health privacy law.
condition monitored, and the planned uses of the data. Some systems use non--name-based reporting mechanisms; others require names and other personal
identifiers for case reporting. We examine the conditions under which it is ethically
justifiable to create and maintain a public health surveillance system that, in
addition to the disease or health outcome, risk factors, and demographic
characteristics, requires that a name or other identifying information be reported to
the local or state health official for storage and future use.
A2 Its
Multi-jurisdictional law enforcement task forces transfer
jurisdictional power to state authorities
Brenda Grantland (private attorney in Mill Valley California, with 30 years'
experience primarily in asset forfeiture defense, as well as federal criminal appeals
and victims rights and restitution. Brenda handles federal cases throughout the
country, and frequently works with other attorneys or legal teams as a consultant or
co-counsel) February 2015 The truth about federal multi-jurisdictional task forces:
resources for reporters writing about Holders policy change
http://brendagrantland.com/truthjustice/the-truth-about-federal-multi-jurisdictionaltask-forces/
My final rant (for tonight) about multi-jurisdictional drug task forces: The Holder
policy order is partially a clever ploy to appease those clamoring for forfeiture
reform but also a Trojan horse. It is a Trojan horse because it will force state and
local police agencies to form multi-jurisdictional task forces with the federal
government if they want to preserve their previously abundant Equitable Sharing
revenue streams. Task forces are governed by contract between participating police
agencies. State and local police agencies are created and regulated by statutes
and/or ordinances, and answer directly to the local or state government which
created them, and the agencys chain of command answers to the top official of the
agency, with internal checks and balances to ensure that they enforce the law they
were hired to enforce. The state or local legislature controls their purse strings and
that is a big motivator to get them to obey the applicable state or local law. The fact
that the federal government could override that statutorily established chain of
command, substituting federal law for the law of the state, county or city that hired
them is questionable in itself. That state and local officers chain of command could
be supplanted by a board of directors created by private contract between law
enforcement agencies is a topic of grave concern that warrants discussion. Once
agents are detailed to task forces, the chain of command is no longer the usual
government hierarchy of the county sheriffs department, city police, or state police
even though those local agencies continue to pay their salaries. Who do the task
force agents ultimately answer to? They owe their allegiance not to the chain of
command of the agencies that pay their salaries, but to a board of directors chosen
by their individual participating government agencies, governed by the task force
coordination agreement. The Holder policy change will only cut off Equitable Sharing
revenue to state and local police agencies that remain under the chain of command
of their local agencies. This policy change will force the local agencies to form
federal task forces to preserve their revenue streams. From what I conclude from
reading the DEAs website, forming a federal task force is an easy thing to do. They
just negotiate a contract with surrounding local law enforcement agencies to create
a multi-juridictional task force and apply to have the DEA sponsor it. The local
agents get cross-deputized as federal agents (probably a brief ceremony with no
entrance test or prerequisites except maybe a criminal background check). This
empowers all of them to enforce federal law while they are on the payroll of state
and local law enforcement agencies. The state and local agencies are rewarded by a
kickback from the Equitable Sharing program of a percentage of the forfeiture
revenue generated each time their agents on the task force help generate federal
forfeiture revenue. The Equitable Sharing program promises law enforcement
agencies up to 80% of the proceeds of the forfeiture case they work on, with the
profits being split up according to how much each agency contributed, with the U.S.
Department of Justice being the sole arbiter on who gets what percentage of the
loot, with unreviewable discretion to decide as it pleases. Nation wide, police
agencies are showing serious lacks of control already violations of civil rights, use
of excessive force, falsification of evidence and other misconduct. Stricter oversight
is needed to regain control over the forces that are supposed to be maintaining law
and order. They dont need more autonomy.
***NEG***
1NC
Text: The United States Federal Government should track
healthcare companies quality of care by mandating that
Department of Health and Human Services evaluate health
care companies for privacy protections. The United States
Federal Government should mandate that health institutions
use high security cloud computing to store sensitive data
about patients by enforcing encryption and redaction
measures.
Cloud computing has potential to secure patient data if health
care providers implement encryption and redaction measures
Filkins 14 (Barbara Filkins. Senior SANS Analyst and Healthcare Specialist. New
Threats Drive Improved Practices: State of Cybersecurity in Health Care
Organizations. December 2014. P. 19. https://www.sans.org/readingroom/whitepapers/analyst/threats-drive-improved-practices-state-cybersecurityhealth-care-organizations-35652)//EMerz
This emphasis indicates that the cloud-computing industry has matured.
Respondents are now looking toward secure access and data-centric controls and
are less concerned with operational considerations such as monitoring of cloud
applications for vulnerabilities and threats. Cloud computing may be an area where
secure, multifactor authentication, which combines two or more independent
credentialssuch as what the user knows (password), what the user has (security
token) and what the user is (biometric verification)also takes off. This year, 60% of
respondents said they are using multifactor authentication as their top control to
address the risk to data and applications in the cloud. This represents a shift from
2013, where APIs for data reporting, auditing and providing alerts were cited by
respondents as the top security control for addressing cloud security concerns.
Cloud computing is also driving a more data-centric method of security, which
focuses on protecting data rather than just protecting the network or application in
which the data lives. Starting a data-centric security plan involves learning and
understanding where sensitive data resides, as well as how that information will be
used, accessed, managed, retained or retired across its life cycle. The next step is to
assess the risks and determine the policies and resources needed and available to
monitor and control risk in cloud-based computing models. For example, storing
data in the cloud demands encryption for the data at rest. Is that provided through
the internal application or the cloud services provider? Sharing that same data
among individuals with different roles and levels of access might demand further
modification of data to protect it, such as redaction, masking or a combination of
both.
not necessarily result in higher trust, rather it is associated with value congruence regarding participation, patient
involvement produced higher trust where patients wanted to participate.9 In contrast, evidence as to what builds
institutional trust is sparse, with trust relations between providers and between providers and managers a
conducted to identify how different modes of governance affect institutional trust. The focus of trust relationships
the sociology of the professions 5 gained from ensuring that both interpersonal and institutional trust are
developed, sustained, and where necessary rebuilt. Trust is still fundamental to the clinicianpatient relationship but
as that relationship has changed so has the nature of trust. Trust is now conditional and has to be negotiated but,
whilst clinicians may have to earn patients trust, there is good evidence as to what is required to build and sustain
such interpersonal trust. The lack of knowledge about how institutional trust can be developed indicates the need
for research, ideally through inter-country comparisons to identify whether such trust varies by health system and
how it can be generated. The cost of failing to recognize the importance of trust and to address the changing nature
of trust relations could be substantial: economically, politically, and most important of all, in terms of health
outcomes.
2NC Extensions
Government monitoring of healthcare quality ensures trust in
patients
CQHCA 1 (Committee on the Quality of Health Care in America. Crossing the
Quality Chasm: A New Health System for the 21st Century. March 1, 2001.
http://www.ncbi.nlm.nih.gov/books/NBK222265/)//EMerz
Recommendation 2: All health care organizations, professional groups, and private and public purchasers should
pursue six major aims; specifically, health care should be safe, effective, patient-centered, timely, efficient, and
safety, effectiveness, patientcenteredness, timeliness, efficiency, and equity are achievable throughout the
health care sector. This opportunity for improvement is not confined to any sector, form of payment, type of
organization, or clinical discipline. Problems in health care quality affect all Americans today,
and all can benefit from a rededication to improving quality, regardless of where they receive
equitable. The committee believes substantial improvements in
their care. The committee applauds the Administration and Congress for their current efforts to establish a
mechanism for tracking the quality of care. Title IX of the Public Health Service Act (42 U.S.C. 299 et seq.; Agency
for Healthcare Research and Quality Part A) provides support for the development of a National Quality Report,
which is currently ongoing. Section 913(a)(2) of the act states: Beginning in fiscal year 2003, the Secretary, acting
through the Director, shall submit to Congress an annual report on national trends in the quality of health care
provided to the American people. Recommendation 3:
4. Mobile devices are also a source of additional risk, according to respondents. Not
surprisingly, 92% of respondent organizations allow access to calendar and email
via mobile devices. However, 52% also allow respondents to access health record
information from their mobile devices, and nearly as many access data from cloudbased applications, through which they may be processing highly sensitive data, as
discussed previously (see Figure 5).
***States CP***
1NC
Text: The 50 states and relevant US territories should apply
strict scrutiny to public health surveillance programs.
State privacy protections are extremely effective
Terry 14 (Nicolas P. Terry. Big Data Proxies and Health Privacy Exceptionalism.
2014. P. 19-21
https://www.ftc.gov/system/files/documents/public_comments/2014/01/0000489091.pdf)//EMerz
Health privacy and HIPAA frequently are viewed as indistinguishable. However,
health privacy
exceptionalism is not restricted to federal law. In the decade and a half since the appearance of
the HIPAA regulations and notwithstanding the Privacy Rules limitation on preemption, state law regarding
health privacy appears to have receded into the background. The Bush Administrations
health information technology narrative included the characterization of divergent state laws as impeding EHR
implementation. 144 Furthermore, in the intervening years several states have normalized their laws with HIPAA.
There are explicit protections of privacy in a handful of State constitutions .146 And
some state supreme courts have implied such a right147 that subsequently has been applied in cases involving
state
legislatures embraced strong, exceptional health privacy models (particularly in the preHIPAA years). 149 Indeed many state privacy statutes continue to escape preemption due
to HIPAAs more stringent provision. Any generalized account fails to credit
the resilience of health privacy exceptionalism in some states . Of course, there
medical information.148 Yet there is nothing that could be as described as exceptional. In contrast, many
should be little surprise that California has built on its enviable consumer protective reputation with additional
of Health Information Integrity to ensure the enforcement of state law mandating the confidentiality of medical
information and to impose administrative fines for the unauthorized use of medical information153 which requires:
Every provider of health care shall establish and implement appropriate administrative, technical, and physical
safeguards to protect the privacy of a patient's medical information. Every provider of health care shall reasonably
safeguard confidential medical information from any unauthorized access or unlawful access, use, or disclosure.
clear and unambiguous permission before using health information for marketing 156 and broadly prohibits the
sale of an individual's protected health information.157 As discussed above, HITECH (together with a change in
administration) provided the enforcement focus that HIPAA had lacked.158 However, the 2009 legislation did not
alter the longstanding HIPAA position of not permitting private rights of action.159 Of course a small number of
states permit such actions under their health privacy statutes.160 However, almost all jurisdictions allow some
species of the breach of confidence action in such cases,161 and some even allow HIPAA in through the back door
establishing a standard of care in negligence per se cases.162 For example, Resnick v. AvMed, Inc., concerned two
unencrypted laptops that were stolen from the defendant managed care company. The compromised data
concerned 1.2 million persons, some of whom subsequently became victims of identity theft. Dealing with Florida
law allegations of breach of contract, breach of implied contract, breach of the implied covenant of good faith and
fair dealing, and breach of fiduciary duty, the Eleventh Circuit addressed the question whether plaintiffs had alleged
a sufficient nexus between the data theft and the identity theft. The court concluded that the plaintiffs had pled a
cognizable injury and . . . sufficient facts to allow for a plausible inference that AvMeds failures in securing their
data resulted in their identities being stolen. They have shown a sufficient nexus between the data breach and the
Solvency Flexibility
States solve better
Duffy et al 11(Effective State-Based Surveillance for Multidrug-Resistant
Organisms Related to Health Care-Associated Infections,Jonathan Duffy, MD,
MPH,a,b Dawn Sievert, PhD, MS,a Catherine Rebmann, MPH,a Marion Kainer, MD,
MPH,c,d Ruth Lynfield, MD,c,e Perry Smith, MD,c,f and Scott Fridkin, MDa Division of
Healthcare Quality Promotion, Centers for Disease Control and Prevention, Epidemic
Intelligence Service, Centers for Disease Control and Prevention, Atlanta, GA 2011
Mar-Apr; http://www-ncbi-nlm-nihgov.proxy.lib.umich.edu/pmc/articles/PMC3056030/?tool=pmcentrez)
A primary aim of public health surveillance is to direct prevention and control
activities and monitor their effectiveness. Collection of surveillance data by itself
does not control disease or constitute public health action. As public health
agencies operate with finite resources, implementation of surveillance tools should
occur in conjunction with a plan to interpret and act on the data collected.
Resources should be devoted to MDRO surveillance activities only when resources
are also available for specific MDRO infection- or transmission-prevention activities
or to build capacity to respond with public health action to the MDRO surveillance
data. Moreover, integrating input from local partners and key opinion
leaders in infection control and prevention to ensure that any surveillance
and response strategy is consistent with regional priorities or concerns is
critical. A state is more likely to develop a surveillance system that meets
its particular needs and functions well within the constraints of its
available resources if the state health department takes an active role in
deciding what MDRO surveillance activities are appropriate for its
circumstances. Surveillance activities developed in response to mandates
created without health department input could lack these characteristics.
Solvency - Speed
Stats solve quicker public health responses
Galva et al 5 (Jorge, JD MHA, Christopher Atchison, MPA, Samuel Levy, PhD SM, analysts for
Public Health Reports, Public Health Strategy and the Police Powers of the State
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2569983/ 2005 JM)
The preparedness of the U.S. public health system to respond to acts of terrorism
has received a great deal of attention since September 11, 2001, and especially
subsequent to the anthrax attacks later that year. The use of biologic agents as a
weapon has served as a catalyst to better aligning public safety and health
strategies through public health law reforms. Associated with this work is the
renewal of the debate over the most appropriate means to both protect the public
and asssure the rights of individuals when implementing readiness strategies. A key
element of the debate focuses on what is a reasonable application of state-based
police powers to ensure community public health standards. The doctrine of state
police power was adopted in early colonial America from firmly established
English common law principles mandating the limitation of private rights when
needed for the preservation of the common good. It was one of the powers
reserved by the states with the adoption of the federal Constitution and was
limited only by the Constitution's Supremacy Clausewhich mandates preeminence
of federal law in matters delegated to the federal governmentand the individual
rights protected in the subsequent Amendments.1,2 The application of police power
has traditionally implied a capacity to (1) promote the public health, morals, or
safety, and the general well-being of the community; (2) enact and enforce laws for
the promotion of the general welfare; (3) regulate private rights in the public
interest; and (4) extend measures to all great public needs.3 The application of
police powers is not synonymous with criminal enforcement procedures; rather,
this authority establishes the means by which communities may enforce civil selfprotection rules. More specifically, public health police power allows the states to
pass and enforce isolation and quarantine, health, and inspection laws to interrupt
or prevent the spread of disease. Historically, the exercise of public health police
power was enforced with strong support of the courts and restraint of police power
occurred only when there was open disregard for individual rights. The abilities of
states to exercise their police powers has been constrained since the 1960s by the
legal and social reexamination of the balance of power between the individual, the
states, and the federal government, which affects contemporary efforts to reform
public health law in the face of terrorism. Given the development of the criminally
based threats to health marked by bioterrorism, the relatively recent emphasis
on the personal rights side of the equation should be reassessed.4 A
reexamination of the legal, ideological, and social limits of police power is
appropriate since increased state capacity can be crucial for first responses
to terrorist threats or actions. Effective first responses may be hampered in the
absence of pragmatically designed realignments of the state-individual relationship
and the redesign of state public health infrastructures.5 This article begins with an
historical overview of the doctrine of state police power, addresses recent
limitations imposed on the implementation of public health police powers, then uses
the example of the imposition of quarantine orders to illustrate the state's capability
to impose such orders in exercise of its police power. Finally, it suggests changes in
state public health agency governance, focus, and regulation to rebalance public
and private interests.
Solvency General
States solve besthave a balance of privacy and effectiveness
Galva et al 5 (Jorge, JD MHA, Christopher Atchison, MPA, Samuel Levy, PhD SM, analysts for Public Health
Reports, Public Health Strategy and the Police Powers of the State
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2569983/ 2005 JM)
The recent experience with quarantine measures as the principal method used
against SARS validates this conclusion.44 Taiwan successfully implemented a broad
quarantine program: 131,132 persons were placed under strict quarantine orders
that required them to stay where they were quarantined, submit to periodic
temperature checks, and sharply restrict transportation or visits to public places.
These measures were needed because of the unknown transmissibility of SARS;
they are associated with the rapid control of the epidemic in that country.71
Although the Canadian government attempted to use voluntary isolation, ultimately
orders were issued for mandatory quarantine when the use of voluntary isolation
became difficult.72 The Canadian government's response was later characterized as
deficient, while the limited spread of SARS in Canada has been attributed to
chance.73 It is hard to envision the application of the MSEHPA in a manner
congruent with stringent quarantine measures. The procedural guarantees in the
MSEHPA may well be impossible to implement due to the risk of exposing judges,
witnesses, and the public to possible contagion. In addition, the judiciary and public
authorities are not prepared to implement quarantine orders due to lack of
familiarity with public health doctrines or logistical shortcomings.74,75 The effects
of one successful injunction resulting from these shortcomingsvery likely under
the MSEHPAallowing, for example, a single SARS super-spreader to avoid
quarantine, could be devastating.76 A perfect balance between private and public
rights in the face of a highly infectious disease may not be attainable, or even
desirable. Emergency activities will be effective if the states' exercise of
public health police power is strengthened by good scientific practices and
rigorous application of justified means of control. Expiration of any
extraordinary powers once the emergency is controlled remains an obligatory
feature unless there is reauthorization on the basis of solid scientific evidence. The
ultimate goal of public health law should be the reinforcement of public health on
the basis of historic principles of police power allowing broad but temporary
administrative activities that are needed to face an impending emergency when the
situation warrants.77 This necessitates a return to the traditional historic bases of
public health police power. Recommended steps in this direction should include: (1)
reinforcing the administrative capability for the issuance of robustly evidence-based
public health orders properly issued under authority of law; (2) removing all judicial
pre-intervention review measures of such orders while limiting review of public
health orders to the post-execution phase; (3) subjecting all public health orders to
automatic expiration terms and making renewal of the orders contingent on the
same robust degree of evidence allowing the original order.
The US Constitution does not impart a broad right to the privacy of individual health
information.7 At the federal level, statutes place boundaries around the collection,
use, and disclosure of certain types of health-related information. These statutes
include the Freedom of Information Act,8 the Privacy Act of 1974,9 the Department
of Health and Human Services (HHS) Human Subject Protection Regulations,10 the
E-Government Act of 2002, 11 the Family Educational Rights and Privacy Act,12 the
Federal Drug and Alcohol Confidentiality provisions,13 and the Genetic Information
Nondiscrimination Act.14 These statutes restrict the use of information for different
purposes. For example, the HHS Human Subjects Protection Regulations focus on
protecting information in the research context. However, the most frequently cited
law in discussions of the privacy of public health information is the Health Insurance
Portability and Accountability Act (HIPAA) and its associated regulations. The HIPAA
Privacy Rule protects most health records from disclosure but permits health care
providers to make disclosures to public health officials and for certain other
purposes.15 The rule does not protect information possessed by public health
officials from disclosure, except in limited circumstances. HIPAA also does not
preempt state laws on the use or disclosure of data by public health authorities.16
Because there is no national standard for safeguarding all data held by public health
agencies, state laws remain central to discussions of the privacy, confidentiality,
security, use, and disclosure of information within the public health system.17
These state laws have been reported to be fragmented and antiquated, and to fail
to effectively balance competing individual interests in privacy with the need to
share public health data and information for the common good.18(p1389) For
more than a decade, both public health advocates and privacy advocates have
responded to this need by calling for clearer protections for state public health
information and developing model state policies.17,19,20 To disseminate ideas to
update state public health privacy laws, Gostin et al. developed the Model State
Health Privacy Act (MSHPA), a model statute for states to use as a guide in
developing new laws, in 1999.18 The MSHPA contains detailed language about the
appropriate acquisition and use of public health information, terms for when it is
appropriate for state health departments to disclose that information, and penalties
for noncompliance. After the events in the fall of 2001, the Model State Emergency
Health Powers Act (MSEHPA) was drafted to promote the adoption of state public
health emergency statutes that contained, among other things, language related to
the disclosure of public health information.21 Despite these efforts, anecdotal
information suggests that few states have adopted public health privacy and
disclosure provisions recommended in the MSHPA and MSEHPA. To address the lack
of adoption of provisions by states and the continuing development of new
approaches to data exchange, Lee and Gostin recently recommended a set of
national principles for protecting public health data.17 The principles included
discussion of use of data for legitimate public health purposes, collection or use of
the minimum information necessary, data use agreements and security measures,
and stewardship and trust. The need to develop a common approach to the use and
disclosure of public health information has also been recognized as more than solely
a domestic problem; various professional organizations (e.g., the International
Epidemiological Association22) have developed guidelines for the use of data by
their members, and an international collaborative is seeking to develop a collective
code of conduct for the use of public health data.23 An analysis of current public
health privacy laws can inform these efforts. The success of a national or
international set of principles for the use and disclosure of personally identifiable
health information under the control of the public health system depends, in part,
on acknowledging the specific political and historical factors that have resulted in
existing laws. In the United States, understanding current state laws may assist in
identifying approaches to bridging the gap between the reality that state and local
public health agencies face and ideal policies, frameworks, or practices for the use
and disclosure of public health information. Identifying approaches and patterns in
existing state laws is also an essential first step in further analyses of what laws are
effective.
States have traditionally been the primary regulators of health care information. While
the promulgation of the Federal Health Privacy Rule changes the regulatory landscape, it need not supplant the
importance of state health privacy laws. In fact, states have often become more active after the enactment of federal privacy laws,
enacting statutes that either mirror or build upon the federal protections. This approach, endorsed by the Privacy Protection Study Commission in the 1970s,
ensures that the states will be able to enforce the law and protect their
citizens.8 4 Because the Federal Health Privacy Rule does not preempt current or future
stronger state health privacy laws, the states have ample opportunity to fill the gaps
and strengthen the weaknesses of the federal regulation . States therefore should not rely
solely on the Federal Health Privacy Rule to protect the privacy rights of their citizens. Rather, states should
take advantage of the need to evaluate their health privacy laws in light of the Federal Health Privacy Rule and take appropriate action. States with little statutory protection of health
information in place may want to use Federal Health Privacy Rule as a roadmap for enacting comprehensive state health privacy laws. At a bare minimum, states can mirror the
may accomplish the same goals through slightly different requirements (e.g., different content requirements for a notice advising the patient of information practices). In this
States
should also use this as an opportunity to fill in gaps in state law that may exist (such as having statutory access rights to hospital
situation, a state may want to harmonize its provisions with the Federal Rule in order to avoid confusion and to afford some degree of uniformity between states.
HIPAA's privacy rule governs how health-care providers handle the use or disclosure
of protected health information (PHI). In effect, PHI is defined as individually identifiable health
information relating to the condition of a patient, the provision of health care or payment for care. All states
already have privacy laws that apply to such information . Areas such as patient consent,
access to records and subpoena rights, to name a few, are included under HIPAA as well as state laws. So, will
HIPAA's rules preempt state laws? "The
Utah law requires that psychologists obtain signed consent, while the HIPAA
privacy rule does not require consent. So, Utah law applies instead of HIPAA in this case
records.
because the state law gives patients greater privacy protection. Other states may have similar laws that would take
precedence over HIPAA. Patient access to psychotherapy notes. Under HIPAA, patients are granted access to their
records, with the exception of "psychotherapy notes," better known as what psychologists traditionally call "process
notes." But in some states, such as Vermont, patients can access their psychotherapy notes under state law. So,
when a patient of Vermont practitioner Dr. Jones asks to see his notes, Dr. Jones must permit the patient to see the
Because Vermont law provides greater rights from the patient's standpoint for
it takes precedence over the HIPAA
requirements. Again, several other states may have such protective laws. Subpoena of patient records. Dr.
notes.
Milton, a psychologist in New Hampshire, receives a subpoena requesting one of his patient's records. Attached to
the subpoena is a notice from the requesting party's attorney stating that her office has made diligent but
unsuccessful efforts to reach the patient to serve notice that his records are being requested. This is an adequate
attempt to notify the patient under HIPAA and, therefore, the psychologist would not be barred from producing the
patient's records if HIPAA took precedence. However, under New Hampshire law, psychologists are precluded from
producing their patients' records for a third party absent a court order or patient consent. New Hampshire law is
more protective than HIPAA with respect to records subpoena. Therefore, state law preempts HIPAA in this case.
There are myriad examples--aside from the three above--of how state laws may
take precedence over HIPAA. The simple rule of thumb is that any provision--in state laws or HIPAA--that
gives greater protection to patients' privacy or right to access their own health information takes precedence. The
HIPAA privacy rule "won't impair the effectiveness of state laws that are more
protective of privacy," says Russ Newman, PhD, JD, APA's executive director for practice. And, he notes,
in states where protective laws haven't been enacted, HIPAA will not prevent states from enacting laws that provide
greater patient privacy protection. HIPAA assumes that practitioners know the ins and outs of their state laws, but
figuring out which law will take precedence involves a complicated analysis of state statutes, regulations and
common law decisions. The APA Practice Organization and the APA Insurance Trust are developing comprehensive
resources for psychologists that will facilitate compliance with the HIPAA privacy rule. Along with several offerings, a
new product, "HIPAA for Psychologists"--which will include the necessary state-specific forms that comply with both
the HIPAA privacy rule and relevant state law--will be available for purchase online at the Practice Organization's
new practitioner portal.
Do they offer the promise of medical advances, or the threat of general searches,
which the authors of the Bill of Rights were so concerned to protect against?87 For
example, a 2013 report from the Citizens Council for Health Freedom alleges broad
state health surveillance based on individual and often identifiable records.88
However, public health authorities are not only voraciously consuming patient data
but also abetting the acquisition of the same by big data companies. Researchers at
Harvards Data Privacy Lab have found that thirty-three states re-release patient
hospital discharge data that they have acquired as HIPAA-permitted recipients of
patient data. 89 Generally states release this data (that is no longer in the HIPAA
protected zone) in somewhat de-identified or anonymized form but with little
restriction on future use of the data. The nave thought that such data was only
being released to academic researchers was upended by the Data Privacy Labs
discovery that many of the major buyers of such state health databases were big
data companies.90 Most states only charge small fees that are not a major source
of revenue for them, and many are oblivious to this practice.91 The obvious
solution is for the state public health agencies to contractually prohibit reidentification. For example, the National Practitioner Data Bank (NPDB) collects
information about physician malpractice awards, adverse licensure reports and
Medicare/Medicaid exclusions. Although it is not a public resource the NPDB does
release de-identified data. Following a re-identification episode NPDB now contains
a prohibition on re-identification, specifically against using its dataset alone or in
combination with other data to identify any individual or entity or otherwise link
information from this file with information in another dataset in a manner that
includes the identity of an individual or entity. Clearly, state health departments
and any similarly placed recipients of HIPAA data should require similar restrictions.
Indeed, the proposed FTC privacy framework would mandate such: . . . [I]f a
company makes such de-identified data available to other companies whether
service providers or other third parties it should contractually prohibit such entities
from attempting to re-identify the data. The company that transfers or otherwise
makes the data available should exercise reasonable oversight to monitor
compliance with these contractual provisions and take appropriate steps to address
contractual violations.95 Until such prohibitions are instituted HIPAAs public
health exception unpardonably will continue to facilitate the laundering
of protected patient data as it is transferred from a data protected domain
to unprotected space.
***Disad Links***
Politics Link
Congress has no interest in changing health surveillance
standards
Evans 13 (Barbara J. Evans. Professor of Law; Co-director, Health Law & Policy
Institute; Director, Center on Biotechnology & Law, University of Houston Law
Center, Yale Law School; M.S., Ph.D. Stanford University; Post-doctoral Fellow, The
University of Texas M.D. Anderson Cancer Center. Institutional Competence to
Balance Privacy and Competing Values: The Forgotten Third Prong of HIPAA
Preemption Analysis. P.1189-1190.
http://lawreview.law.ucdavis.edu/issues/46/4/Articles/46-4_Evans.pdf)//EMerz
The problem, however, is that Congress appears to lack this desire. An
excellent opportunity to address this problem came and went when Congress
introduced major amendments to the HIPAA statute in the 2009 Health Information
Technology for Economic and Clinical Health (HITECH) Act.74 Congress declined to
expand HIPAAs preemption of state privacy law. Pragmatism counsels that HIPAAs
preemption provisions are not likely to change. Those who favor a more
uniform legal framework to support large, interoperable public health data networks
and public health uses of data must find a way to achieve these goals within the
existing preemption framework. To paraphrase Donald Rumsfeld, You go to war
with the [HIPAA preemption provisions] you have, not the [provisions] you might
want or wish to have at a later time.75 Accordingly, this Article takes a fresh look
at HIPAAs existing preemption provisions to check for tactical opportunities that
earlier scouts may have overlooked.
narrow context public health uses of data and biospecimens and then only
when read in conjunction with the HIPAA statute. The rulemaking carefully set the
stronger statutory preemption provision at 42 U.S.C. 1320d-7(b) to one side and
avoided making it a topic of rulemaking discussions.
The debate over the plan get dragged into the ObamaCare
debate
Katherine Gasztonyi (associate in the firms Washington, DC office and a member
of the Privacy & Data Security and Intellectual Property Rights practice groups)
2014 House Republicans Signal Push for Data Breach Legislation
http://www.insideprivacy.com/united-states/congress/house-republicans-signal-pushfor-data-breach-legislation/
In the wake of the recent Target Corp. credit card data breach, Congress is once
again turning its attention to data breach legislation. In a memorandum to
Republican lawmakers on January 2, House Majority Leader Eric Cantor (R-Va.)
stated that he intends to schedule legislation on security and breach notification
requirements for federally facilitated healthcare exchanges when Congress resumes
session next week. Democratic leaders characterized the news as yet another
effort by Republican lawmakers to undermine the Affordable Care Act rather than a
serious effort to deal with data security issues.
***Case***
subjects could well become among its most ardent advocates, thus underscoring a
politics that goes beyond the politics of privacy. In the late 19th and early 20th
centuries, as public health was extending the ambit of surveillance, the medical
community reacted with hostility, particularly when it came to tuberculosis
surveillance and seemingly threatened to intrude on the sanctity of the clinical
relationship, over which the physician was guardian. Medical Record editor George
Shrady thus complained of TB surveillance, The compulsory step taken is a
mistaken, untimely, irrational, and unwise one.... The real obnoxiousness of this
amendment to the sanitary code is its offensively dictatorial and defiantly
compulsory character. It places the Board [of Health] in the rather equivocal
position of dictating to the profession and of creating a suspicion of an extra bid for
public applause [4]. "Already," he continued, "the profession as a whole has
watched with jealous eye the encroachments of the Board upon many of the
previously well-recognized privileges of the medical attendant" [4]. Over time,
disease reporting was extended to chronic, noncontagious conditions such as
cancer, birth defects, and occupational illnesses. Not only physicians but
laboratories were often required to report cases to local health authorities. The
surveillance of chronic diseases, of course, differs because these conditions do not
represent a direct threat to the health of others. And, indeed, when state and local
health departments first began tracking conditions like congenital malformations
and cancers in the first half of the 20th century, these initiatives typically served
epidemiological or research purposes only. These reporting efforts, critically, also
became linked to the assessment and improvement of clinical care. Tumor
registries, for example, emphasized patient care improvement since the 1950s and,
currently, data from the National Cancer Institute's SEER program (Surveillance,
Epidemiology, and End Results Program) are routinely used for quality improvement
initiatives. It was not until the AIDS epidemic that activists challenged the longstanding tradition of name-based reporting. Even so, as AIDS has become a more
treatable disease, resistance to reporting has all but vanished. In the 1990s, the
promulgation of national standards to safeguard the privacy of medical records, as
dictated by HIPAA (the Health Insurance Portability and Accountability Act),
provoked intense public debate. But there was virtually no opposition to carving out
an exception in the guidelines for the reporting of diseases to public health
agencies. While there was initial uncertainty among physicians and researchers
about whether hospitals could continue to provide cancer data to state registries,
the Department of Health and Human Services made clear that HIPAA did not serve
as an obstacle to reporting. In the early 20th century it was physicians who
spearheaded opposition to surveillance; since the 1970s, patients have often been
at the forefront of challenges to reporting diseases. Parents of children with
disabilities, for example, successfully changed the terms of birth defects
surveillance in Minnesota, requiring the state to allow unwilling parents to opt out of
reporting. Patient advocates within the American Diabetes Association forced New
York City health officials to place limits on an initiative to track cases of diabetes.
But just as often, patients with serious illnesses have pushed for better tracking of
their conditions. Breast cancer survivors have emerged as the most ardent
defenders of universal name-based cancer reporting, recognizing how important
surveillance and the research it makes possible is to their own well-being. Similarly,
https://privacyassociation.org/news/a/public-health-surveillance-and-privacy-in-theage-of-ebola/
Being able to introduce anonymization methods into practice to ensure data
custodians are willing to share data for public health purposes is important in the
age of such epidemics as Ebola. The efficiency with which we track and investigate
outbreaks is directly related to the spread of the disease. There is an urgency to get
access to data. And it is not always health data that is important. Ongoing public
health surveillance systems would allow rapid detection of and reaction to
outbreaks. But this can only happen if privacy concerns that currently act as a
barrier are addressed. Privacy does not have to be an obstacle, but it is an issue
that needs be dealt with upfront when these surveillance systems are put into
place. We cannot take for granted that data custodians are willing to share their
data, even when there is an outbreak, as we saw during H1N1.
Thomas R. Frieden (Director, U.S. Centers for Disease Control and Prevention;
Administrator, Agency for Toxic Substances and Disease Registry) September 2012
Non-Communicable Diseases and the New Global Health
http://www.cfr.org/diseases-noncommunicable/non-communicable-diseases-newglobal-health/p35310
Really, let me say one thing about the problem and one thing about the solution.
Noncommunicable diseases are sometimes mischaracterized as diseases of
affluence because we have the concept that as people get richer, they do more
unhealthy things, and these diseases follow. But actually, I think these are
fundamentally diseases of poverty. They're diseases of poverty because in most
countries, not only do they disproportionately affect the poor, but they perpetuate
poverty in individuals, in families, in communities and, perhaps most importantly, in
countries. Noncommunicable diseases are an enormous drag on economic
development, on health care systems, on workplace productivity. And so they have
enormous economic implications for individuals, families, communities, work sites
and countries. The global burden of disease has really shifted. For the first time in
human history, we have more people living in cities than in rural areas. We have
more people who are overweight than underweight. We have more deaths among
adults than among children. And we also have more people dying from
noncommunicable diseases in poor countries than in rich countries, with higher
rates of noncommunicable diseases in poor countries than rich countries. In fact, in
poor countries, half of all deaths from noncommunicable diseases occur before the
age of 70. In rich countries, it's about a quarter of all deaths from noncommunicable
disease before the age of 70. So these are huge differences, and now noncommunicable diseases kill more people than communicable diseases, about twothirds of all of the world's deaths, and that burden is not only high, but it is
increasing and on a trajectory to increase even further.
imagine them
looking at your medical records. The private realm may be ever-shrinking in an age when we reveal so
much of ourselves online and when we know the eavesdroppers of the NSA and GCHQ are never far away
but if there's one thing we'd want to keep behind high walls, it's surely the
intimate histories of our mental and physical health . So there can be little surprise that privacy
If you thought someone snooping around your emails and listening to your phone calls was bad,
campaigners are recoiling at the expansion of NHS England's data collection, which from this spring will take in
information from the place where most people experience the NHS: their GP's surgery. Until now, the NHS in
England kept the stats from hospital visits but not from those day-to-day encounters with your local doctor. As
26.5m leaflets pop through letterboxes, explaining the new "care.data" project, groups such as medConfidential.org
are urging patients to opt out in the name of basic privacy. One survey found that up to 40% of GPs plan to keep
their own personal records out of the scheme. My first, unreflective instinct would be to stay out too and others
will surely feel the same way. Indeed, the appeal of that stance says much about the times we live in, both online
and in the physical world. For one thing, less than a year after Edward Snowden's revelations of mass surveillance,
the notion that our medical records will remain closely guarded , viewed only by those
doctors and scientific researchers who need to see them, arouses instant scepticism. Sure, we think. They
said the same about our emails. After Snowden, many will assume that if the authorities want to know
whether we are HIV-positive or once suffered from depression, they'll be able to find
out with just one click. As medConfidential's Phil Booth told the FT: "Everyone agrees medical
research is a good thing but, after the NSA scandal, people are getting wise to the
dangers of these massive data sets." [paywalled link] It doesn't even have to be that sinister. It
wasn't that long ago that government ministers were apologising from the floor of the House of Commons after
Revenue & Customs mislaid two discs containing the names, dates of birth, national insurance numbers and, where
relevant, bank details of 25 million people. What, one wonders now, is to stop the geniuses who brought us that
disaster messing up again, except this time losing not our tax details but the stories of our lives and bodies?
out in all but the most controlled circumstances, or that there are strict rules in place over access to this
information. Nor even that there is an explicit declaration that this data will not be shared with insurance or
marketing companies so no prospect of a Strepsils ad popping up on your screen just after you've seen your GP
link between MMR and autism, or that spotted the connection between Thalidomide and birth defects, or between
the door puts it: "Better information means better care." The pragmatic truth is that this logic extends even to the
There is a principle at stake here too. In a subtle piece for the Socialist Health Association, Prof Dave Byrne recalls
the traditional method of teaching medical students, in which a senior doctor on a ward-round would urge them to
look at and learn from real-life individuals and their treatment: care.data is just a hi-tech version of that process,
says Byrne, gathering together doctors' experience of treating patients. Viewed this way, our individual experience
of treatment suitably anonymised is not our private property, even if it should remain private. Those who treated
us have the right to use that experience to benefit others, to help the collective good. But
anonymity is the
key. None of these arguments in favour of care.data works unless we can be sure those rules on access hold firm
and that the identity of individual patients remains concealed and not easily hacked as some currently fear. And
online anonymity remains vexed. All too often it seems we don't have it when we
should, whether through data loss or NSA-style state intrusion. At the same time, we have too much anonymity
yet
when we shouldn't: witness the social media trolls and abusers, or phoney, astroturf campaigners, able to stay
hidden when they would surely shrivel if exposed to the daylight and forced to reveal their true identities. The
larger obstacle confronting this new scheme goes beyond the virtual realm. It is a change that is infecting almost
every aspect of our shared lives: loss of trust. So the government can issue guarantees of privacy protection and
our first thought is of missing discs, GCHQ eavesdroppers or perhaps hacked phones. Too many institutions have
been exposed as having betrayed their unspoken promises,
http://www.aahcdc.org/Portals/0/pdf/AAHC_HIPAA_Privacy_Rule_Impedes_Research_
Growth.pdf)////EMerz
In short, the majority of survey respondents believe the HIPAA Privacy Rule had a
significant negative impact on the scope, pace, and costs of research. The greatest
concern was expressed about the negative impact on the costs of research.
Respondents also indicated they were aware of research studies that were
stopped or never pursued because of Privacy Rule related problems. The
negative perceptions of research leaders are especially significant. The HIPAA
Privacy Rule imposes another limitation on Americas ability to fulfill the promises of
new science. A lack of interest in scientific careers, and decreased federal
funding of research when coupled with the HIPAA Privacy Rule, create a
burdened and troubled environment for the future.8
That turns case- patients health will be worse off if there are
more barriers to DNA research
Steinberg and Rubin 9 (Mindy Steinberg and Elaine Rubin. Steinberg is a
program associate at the Association for Academic Health Centers. Rubin is the vice
president for policy and program at AAHC. The HIPAA Privacy Rule: Lacks Patient
Benefit, Impedes Research Growth. 2009. P. 3.
http://www.aahcdc.org/Portals/0/pdf/AAHC_HIPAA_Privacy_Rule_Impedes_Research_
Growth.pdf)////EMerz
The problems with the HIPAA Privacy Rule are extensive and are likely to be even
broader than the survey suggests. Furthermore, there is no clear evidence that the
Rule is achieving its intended purpose in the research arena. Given the longstanding
history of the Common Rule in research, it would be most expedient and effective to
exempt research from the HIPAA Privacy Rule and to defer to the Common Rule. The
Common Rule an essential safeguard that has worked successfully has been
responsible for ensuring the protection of research participants safety and privacy
for more than 30 years. The negative impact of the HIPAA Privacy Rule on research
ultimately translates into negative consequences for patients, with more
terminally ill patients missing out on the opportunity to participate in
clinical trials that have the potential to save their lives. To remedy this threat
to research and the American people, revision of the HIPAA Privacy Rule is
imperative. The AAHC recommends that research be exempt from the HIPAA Privacy
Rule and that it be solely governed by the Common Rule. Furthermore, the AAHC
recommends a revision of the Common Rule to incorporate more explicit standards
for the privacy of health information and to augment the protections of the Common
Rule to accommodate new technologies and guard against new threats to patient
safety and privacy
Rothstein has recently argued that collection and use of large quantities of
health information create a substantial challenge for protecting the privacy of
patients and research subjects that is accentuated when biological samples are involved [8]. De-identification, he
suggests, does not solve the problem since the process of removing identifiers implies that someone will
patients. Mark
actually have to do it thus representing an intrusion in private matters. It has also been claimed that re-identification may be
possible by using publicly available databases, provided that one have access to reference samples [9].
Rothstein
suggests that rules about de-identification are insufficient for privacy protection and need to be
comple-mented with rules about notice provisions to patients, such as informed consent, strategies for opt-out, and giving individual
patients a degree of control over the use of data and, where relevant, biological samples. 4.
four reasons In light of the experience with the EUTOS for CML registry we believe that Rothsteins argument fails for four
reasons. 1. Rothstein foresees criticism of his proposal for leading to selection bias in
research, delaying the introduction of new treatment and safety procedures in medicine, but he
claims that at present there is an insufficient empirical basis to assert that adding some level
of privacy and autonomy protection to deidentified health information and biological samples will invariably and unreasonably
disrupt biomedical research (p. 8). However, as has been argued by several, inclusivity and
universality are the keys to successful registry research [10,11]. There is a price to be
paid since all requirements for informed consent , opt-out, re-consent, etc. imply that the
registry will be affected both by those included and those not included. The likely result is
incomplete information and data bank bias that will prevent researchers from tracking
success and failure of treatment and drug efficacy and safety . The immediate victims of this will
be the patients, with those suffering from rare diseases like CML paying the highest price. There are several examples of
bureaucratic ethical review procedures and requests for consent that seriously jeopardized the possibility of doing biomedical
research, at the end exposing patients to increased risks [12,13]. There are recent assessments available of the cost in lives caused
associated with a secluded life are all kinds of social value [19]. They presuppose and acquire their
meaning only in a context where various kinds of social relationships with other individuals
are involved. To be banished to seclusion on a desert island, certainly implies that one will be left in peace, but it is not the
kind of situation which people wishing to protect their private life, strive for. Individu-als, as far as their own personal matters
are concerned, have an interest in being left in peace but they also wish to participate in the
possibilities that are available to citizens in a society. This includes having access to new medical knowledge
attainable only when personal medical data is recorded and shared within the format of large well-managed registries. In order to
further strengthen his argument Rothstein suggests that autonomy is only one
aspect of the broader concept of respect for persons (p. 8) and that this should imply closer regulation of registry
research. However, patients have interests also at the end of the research line , e.g. in new
are
possibilities to follow up the effects of medical drugs with regard to treatment response and adverse reactions, and if they became
aware of the costs of stricter regulation undermining the possibilities of participating in the development of scientific knowledge
between industry and patients organizations should be considered. However ELN provides an interesting example of how doctors
and researchers may be able to collaborate with the pharmaceutical industry while preserving their own integrity. A working party
has just started a controlled trial in order to find out when treatment of CML patients with TKI should be stopped because the patient
will not benefit from prolonged treatment with the drug. Such a study may, arguably, not be in the best (economic) interest of the
drug companies.
endemic or emerging. Risk of TBD increases with the introduction of exotic tick species into new areas and the
expansion of historical tick ranges. One example of exotic ticks that effects the United States is Boophilus annulatus
and B microplus, also known respectively as the cattle fever tick and the southern cattle tick, that were imported
here by Spanish colonists who brought tick-infested cattle and horses with them. These ticks transmit a severe
disease to cattle called Texas fever or cattle fever that caused enormous losses to the US cattle industry in the past.
Present efforts to keep this tick out of the United States exist as the Cattle Fever Tick Eradication Program. (3) Nilgai
antelopes, native to India, Nepal, and Pakistan, that were released into southern Texas are also hosts to the cattle
fever ticks, posing a threat as maintenance hosts of cattle fever. (4) There are many other examples of exotic tick
introductions from migratory birds, exotic and wildlife species, and domestic animals. (5) Changes in climate may
also alter the geographic distribution of tick vectors, and in turn, cause a change in the currently recognized
demographic patterns, seasonality, and incidence of TBDs. (1) (p61) For example, the range of the Gulf Coast tick
(Amblyomma maculatum) has historically been along the Gulf of Mexico and southern Atlantic coast as far north as
South Carolina, and extending approximately 100-150 miles inland. However, resident populations of these ticks are
now established in Arkansas, Oklahoma, and Kansas, (6) and they have been collected on the east coast as far
north as Delaware and Maryland. (7) Another example is the lone star tick (A americanum) which has moved
northward as far as Maine and westward into central Texas and Oklahoma. (8) Incidental introductions of these
ticks, and the diseases they carry beyond endemic regions, occur with increasing frequency. This is likely due to the
feeding of immature ticks on migrating birds, and the transportation of tick-infested livestock and wildlife into new
areas. (6) These introductions may also come from pets belonging to people who move from one area to another. In
addition, suburbanization has contributed to the increase in TBD transmission in North America by bringing people
and their pets close to ticks and by creating new tick habitat. (9) In the northeastern United States, the highest risk
As communities continue to
expand into tick habitat, and people are encouraged to enjoy outdoor recreation and
pursue activities such as urban farming, the risk for peridomestic exposure to ticks and TBDs
may increase. The National Notifiable Disease Surveillance System (NNDSS) of the
Centers for Disease Control and Prevention (CDC) maintains a list of diseases that
are considered to be of public interest by reason of their contagiousness, severity,
or frequency. The 7 TBDs on the NNDSS list are shown in the Table. Many of these diseases, which
are caused by closely related tick-borne pathogens, can also be acquired
internationally. There are also many TBDs that can be acquired abroad that do not occur in the continental
for Lyme disease occurs around the homes of those who have been infected. (10)
United States. In addition to transmitting disease, ticks can cause irritation, pain, and swelling at attachment sites,
otoacariasis (invasion of the auditory canal), paralysis, allergic reactions, and anaphylactic reactions. (11) Heavy
education, and prevention/control programs, together with prompt diagnosis and treatment. (2) (p6) TICK BIOLOGY
AND DISEASE TRANSMISSION Ticks are grouped into 2 separate families. Family Ixodidae, also called hard ticks,
have 4 developmental stages: egg, larva, nymph, and adult. The latter 3 each take one large blood meal and then
molt to the next stage, or lay eggs in the case of the adult. Hard ticks have mouthparts with recurved teeth that
allow them to firmly anchor themselves to hosts while feeding with the assistance of a cement-like substance
secreted by the salivary glands. This allows them to feed for extended periods of time that can vary from 2 to 12
days or longer, depending on species, life stage, and gender. Family Argasidae, also called soft ticks, have the same
4 developmental stages, but most have multiple nymph stages. Soft ticks have mouthparts that allow them to hold
fast to their host, as hard ticks do, but they do not secrete cement. Although some soft ticks can remain attached to
the host for several days, (11) (p501) others can complete a meal within minutes to hours. (12) This is still much
longer than other bloodsucking arthropods such as mosquitoes, and is one of the factors that contribute to their
high vector potential because it increases the likelihood of pathogen ingestion and allows them to secrete large
amounts of host-derived fluid and salivary secretions, which contain pathogens, back into the host. Other factors
ticks efficient disease vectors include a highly sclerotized body that protects
them from environmental stresses, high reproductive potential, and a long life span
that make
(compared to other blood feeding arthropods). Although the majority of TBDs are transmitted during normal feeding
activity, they can be transmitted by other routes as well, including through regurgitation and feces. Argasid ticks
can also release pathogens through excess liquid excreted from the coxal glands located adjacent to the first
segment (coxa) of the front legs. (11) (p512) Adding to their efficiency as vectors, the larvae and nymphs are very
small. The presence of an immature tick on a host often goes unnoticed, enabling the tick to feed to repletion and
sequentially infect their hosts with Borrelia burgdorferi, Anaplasma phagocytophilum, and Babesia microti. (1) (p61)
Co-infections with these pathogens have been reported from wild and domestic animals, including dogs, as well as
These infections can result in more severe and longer illnesses and can
complicate diagnoses. (1) (p493) Ticks are also effective disease reservoirs. In some
humans.
species, pathogens can be transmitted from the adult female to its offspring (transovarial transmission) and from
one developmental stage to the next (transstadial transmission). Infected ticks can also transmit viruses to
uninfected ticks while feeding simultaneously on an uninfected host. (11) (p512) Therefore, they can maintain and
transmit infections even if they have not fed on an infected host. SURVEILLANCE Surveillance is the process of
determining the presence of vectors and pests, estimating their general population levels, and determining if
pathogens of concern are present in the population. It gives quantifiable data on which to base control and
analysis
and interpretation of information gained from surveillance is the basis for
developing quantitative and qualitative risk assessments that can be used to
predict the occurrence of pest outbreaks or vector-borne diseases. (13) (p7) Various
education programs and is the starting point in the prevention of any arthropod-borne disease. The
methods can be used to describe disease risk. One commonly used index is called the Entomologic Risk Index (ERI),
an indicator of the number of infected ticks that a person might come into contact with over a set distance. The ERI
is calculated as the number of infected ticks collected over a 1,000-meter drag (described below). Accurate ERIs are
obtained by testing ticks for pathogens to determine tick infection rate. Public health officials can use indices like
the ERI in public education efforts and to determine if, when, and what control measures should be implemented.
(13) (p7)
there is an
increasing awareness of the need for aggregated data for quality assessments and
drug efficacy/safety assessments. Recent developments in genomics in fact blur the
traditional line between quality assurance and research through the rapidly
increasing possibilities to identify genotypes as well as environmental factors regulating the treatment
assurance analyses while research implies that new questions are being raised as science develops. However,
benefit/risk scenarios. It is actually strange that the demand of mandatory quality assurance that is common in so many other areas
in order to
assure the patient the best medical treatment available at each time research based on
those registries is necessary and should in principle be approved and supported . From
the patients perspective there is no conflict between the interest of documentation in a
medical record, the interest of follow-up and long-term assessment through medical registries (whether local,
national or collaborative on a global level) and the interest of receiving the at each moment best
available treatment based on research. This, we believe, holds not only for rare diseases like CML but also for
in society is not implemented as rigorously in health care where lives are at stake each day. Furthermore,
with others.
Recognize systematic and ongoing public health surveillance as a core public health function
that is essential for population health, economic stability, and national security. Public
health surveillance data is the foundation of public health programs and is required for a
number of purposes, including: to demonstrate the size and impact of the public health
problem being addressed by a program; to identify the population groups to which additional prevention efforts should be
directed; to determine whether the problem is growing in size or abating; to provide feedback to data
providers; and as part of an overall program evaluation strategy. The significant health impacts and economic
costs of disease outbreaks illustrate the critical importance of effective public health
surveillance and rapid response, as well as the cost of inaction [11]. Table 1 provides examples of the
health and financial burdens posed b y some naturally occurring and intentional infectious disease
outbreaks. The values reported in Table 1 do not fully reflect additional indirect costs of
diseases and their potentially crippling effects on a community , nor do they address costs that
are underreported/ unreported due to lack of data. Higher rates of illness, for example, can lead to
lower worker productivity [11], while premature mortality can reduce the size of the labor
force, both of which have economic ramifications. There is growing evidence that these economic and societal
costs can be mitigated by surveillance systems that are stable ; a stable
system provides the best foundation for identifying whether the problem being addressed is getting bigger
or smaller or disproportionately affecting a section of the population, etc., while still allowing flexibility to
provide useful information quickly about emerging issues . The optimum mix of stability
and flexibility will depend on the purpose(s) of surveillance and the particular health condition
under surveillance. For example, in the case of SARS, an effective surveillance system has the potential
to decrease the size of an epidemic by one-third and the duration by 4 weeks, with significant cost
savings [25]. Another study found that the early detection of an outbreak of highly infectious bacterial meningitis saved
approximately $2 for every dollar invested in infectious disease surveillance [26]. Yet
another evaluation of surveillance practice found that technological improvements in a sentinel influenza-like illness (ILI)
surveillance system in Virginia saved over $9,500 (1,992 hours) in staff-time during the 2007-2008 influenza seasons [27 ].
Ongoing surveillance can also inform the design and evaluation of prevention and
intervention programs in order to control the escalating costs associated with chronic diseases in the U.S. and abroad
[28]. Some experts forecast that chronic disease prevention programs could save up to $48.9
billion per year by 2030 [29], while others predict applying electronic medical record implementation and networking to the
prevention and management of chronic disease will exceed the currently projected $81
billion in annual savings [30].
Bioterror Links
More surveillance is key to solve the aff impacts
White House 12 (The White House, from the President of the United States
Barak Obama, NATIONAL STRATEGY FOR BIOSURVEILLANCE
https://www.whitehouse.gov/sites/default/files/National_Strategy_for_Biosurveillance_July_2012.pdf July 31 2012
JM)
national biosurveillance enterprise is a national security imperative . Our
ability to detect quickly and characterize a potential incident of national significance that
affects human, animal, or plant health is of paramount importance. Rapid detection
and enhanced situational awareness are critical to saving lives and improving incident outcomes,
whether the result of a bioterror attack or other weapons of mass destruction
(WMD) threat, an emerging infectious disease, pandemic, environmental disaster, or
a food-borne illness. Beyond our need to protect domestic interests, and because health threats transcend
national borders, the United States also plays a vital role within an international network of
biosurveillance centers across the globe. For years, there have been dedicated efforts to promote and strengthen biosurveillance capabilities.
A well-integrated,
There exists a strong foundation of capacity arrayed in a tiered architecture of Federal, State, local, tribal, territorial, and private capabilities. We can
strengthen the approach with focused attention on a few core functions and an increased integration of effort across the Nation. In these fiscally
accidental, or deliberate in nature. From the individual, to primary care providers, to hospital practitioners, to state and local health officers, to Federal
entities responsible for health emergency response, to the President of the United States, there exists an imperative to identify incidents early and to
global health efforts. We must be resolved to strengthen life-saving biosurveillance capabilities within our existing resources. We can do this by leveraging
more effectively our existing national network of expertise and capabilities, and through targeted enhancements that provide benefits across the
enterprise. There are no higher priorities than the health, well being, and security of the American people.
mitigating the effects of the pandemic : it claims that investment in developing national and regional
pandemic preparedness plans by WHO member nations had paid major dividends and that these plans helped
make the world better prepared to cope with public health emergencies (WHO 2013a: 9,
43). Such plans involved the active surveillance of diseases and public health
events and rapid response to unexpected, internationally-spreading events (WHO 2013c). Active surveillance
and rapid response are important features of whats known as global health
security, which emphasizes preparing for pandemics before they occur through the
adoption of international frameworks for pandemic response . These frameworks, or
preparedness plans, allow public health officials to react quickly, in real time, to mitigate
the effects of pandemics when they occur (Lakoff 2007). Global health security can be seen as part of a
larger program of preparedness, a security paradigm that emphasizes planning for future catastrophic events in the present.
Preparedness, which moved to the center of United States national security policy after September 11, 2001, has also been adopted
by international organizations like the WHO in order to secure against potentially catastrophic pandemics. It is one among several
modes of what Ben Anderson has called anticipatory action: these modes, which also include precaution and preemption, are all
security paradigms that focus on making possible futures available in the present (Anderson 2010; also see Grusin 2010).
Preparedness emphasizes institutional readiness and emergency management, treating a variety of potential catastrophic threats
involved not only the creation of international preparedness plans, but also of international disease surveillance systems that
better deal with its effects (de Goede and Randalls 2009; Lakoff and Collier 2010).
inadequacies of the public health infrastructure caught the nation in the grip
of a profound ambivalence about what we expect from government . For the past twenty
years distrust of public institutions has severely dampened public health spending
and so dominated the political landscape that even the Institute of Medicines stern warning about
about the
deterioration of the infrastructure in 1988 did not generate renewed investment. Then, in the wake of the anthrax
scare, the refrain suddenly became, Why
any proposal that has the appearance of strengthening governmental authority was bound to travel in tumultuous
political waters, Gostin concludes. Three Perspectives that follow Gostins paper highlight the extent of the
disagreement that still exists, nearly a year after the model law was last revised. Gostin is ideally suited to clarify
the difficult issues involved. He is a professor of law at Georgetown University; a professor of public health at the
Johns Hopkins University; and director of the Center for Law and the Publics Health, which drafted the Model State
Emergency Health Powers Act at the request of the Centers for Disease Control and Prevention. In defense of a
model act that was written to bring public health law into the modern age. Public and scholarly discourse in the late
twentieth century became highly oriented toward rights. The political community stressed the importance of
individual freedoms rather than the health, security, and well-being of the community. The salience of individualism
could be seen on both sides of the political spectrum. The ideological left favored a set of personal interests,
principally autonomy, privacy, and liberty. This meant that individuals should be free to make choices, restrict the
flow of health information, and have unfettered movement, without regard to the needs and desires of the wider
community. The ideological right favored a set of proprietary interests, principally the freedom to contract, conduct
business, use and develop property, and pursue a profession. This meant that entrepreneurs should be permitted to
engage in free enterprise without the fetters of, for example, occupational health and safety regulations,
inspections and products liability, zoning and nuisance abatements, and licenses. In this civil and property rights
society, the tone has been distinctly antigovernment. The State has been perceived as inefficient, bureaucratic, and
burdensome. Citizens have opposed taxation and broad health and welfare spending as well as oppressive
regulation. From a funding perspective, this has meant that health dollars have been allocated primarily to
advanced biotechnology and health care, which serve the needs of individual patients, particularly those who can
afford private health insurance. Funding for traditional prevention and population-based services represents only a
small fraction of health spending, estimated at around 1 percent at the state level and less than 5 percent at the
workforce, electronic information and communications systems, rapid disease surveillance and reporting, laboratory
capacity, and emergency response capability.3 The public health law infrastructure is equally deficient. The law
establishes the mission, functions, and powers of public health agencies. Yet public health laws are highly
antiquated, after many decades of neglect. Very little consideration has been given to modernizing these laws to
reflect advances in public health practice and constitutional law. Reform of public health law is essential to ensure
that public health agencies have clear missions and functions, stable sources of financing, adequate powers to
avert or manage health threats, and restraints on powers to maintain respect for personal rights and liberties.
The
health departments around the country have long scrutinized data from local hospitals for
indications that diseases like influenza, tuberculosis, AIDS, syphilis and asthma
might be on the rise, and to monitor the health consequences of heat waves, frigid
weather or other natural phenomena . In the years since 9/11, this scrutiny has come to include
signs of possible bioterrorism. When medical records were maintained mainly on paper, it could take weeks to find out that an infection
was becoming more common or that tainted greens had appeared on grocery shelves. But the growing prevalence of electronic
medical records has had an unexpected benefit: By combing through the data now received almost continuously from hospitals and other
medical facilities, some health departments are spotting and combating outbreaks
with unprecedented speed. More than one-third of the nations 5,000 acute care hospitals now use electronic medical records,
Public
and the share of primary care doctors using them has doubled to 40 percent in the last two years, said Dr. Farzad Mostashari, the Obama administrations
in Michigan noted an increase in electronic reports from clinical laboratories indicating E. coli cases in several counties. Eleven patients were identified,
including six who were hospitalized. In less than a week, officials had enough evidence to warn the public that the infection appeared to be linked to clover
sprouts in food at the Jimmy Johns sandwich chain, said James Collins, director of the communicable diseases division at the states Department of
Community Health. The chain quickly removed the sprouts, and by April, the 11-state outbreak was over.
real time and zero in on the cause faste r, said David A. Ross, director of the Public Health Informatics Institute, a
nonprofit organization that helps write digital standards. That can save both lives and money. In Massachusetts, the data
are being used to prevent hepatitis infections. Medical labs transmit more than 100,000 electronic
reports annually to the state health department. Names are confidential, though available to certain medical
personnel. The agencys software sorts through the reports and every year identifies more than 1,500
cases of hepatitis B for follow-up. Infected women ages 14 to 44 get special attention. Health officials alert their medical providers to
infections; they in turn identify anyone who is pregnant or recently gave birth . Their newborns are vaccinated
and then monitored. Without that prompt protection, those babies risk lifelong infection with hepatitis B and its consequences, liver disease, cirrhosis and
cancer. With paper records, locating at-risk babies would take weeks or months, said Kevin Cranston, director of the infectious disease bureau at the
Massachusetts Department of Public Health. That would be too late to be of benefit to the newborn, he said. Although the C.D.C. recommends prompt
When the
H1N1 flu pandemic broke out in 2009, Wisconsin laboratories generated thousands
of positive H1N1 test results, said Dr. Foldy, who was then chief medical officer of the Wisconsin Health Information Exchange.
We were able to route this electronically into our case management system to alert public health nurses ,
hepatitis B vaccination for all newborns, nationally, four in 10 did not get that protection, according to an agency report last year.
Dr. Foldy said. Because we were getting near real-time information from hospitals, we could see that even with the large numbers of emergency room
visits for flulike symptoms, very few were being admitted as inpatients, he added.
the pandemic was rising and then declining. Public health officials in Marion County, Ind., were among the first to
sound the all-clear in the flu outbreak by tracking the drop in cases from electronic reports from hospitals and laboratories, forwarded by the Indiana
emergency rooms and relays it to relevant public health agencies. Health care providers are required to provide pertinent data electronically to local and
. Using an electronic
records registry, the Urban Health Plan , a network of clinics in the South Bronx and Queens, was able to
triple its caseload of mostly young, low-income asthma patients to 8,100. We are in the
state public health officials, who feed into a national digital network coordinated by the C.D.C. in Atlanta
heart of asthma country, said Dr. Samuel De Leon, a lung specialist who is Urban Healths chief medical officer. His group compared spending per patient
with a Medicaid managed care plan in the city that did not then have electronic monitoring. Using its record system to keep tabs on its patients, Dr. De
York City health officials began using electronic medical records six years ago. After reviewing the incoming medical data, city health department officials
recently discovered that smoking rates are a little higher in Staten Island than in the other boroughs. Now, instead of sending trainers on routine visits to
every primary care doctor to help them learn to use electronic records to improve care, the visits are concentrated to help those physicians whose
state actors to engage in biological attacks is not a new concept; however, the past biological threat environment
has been subdued compared to that of conventional or even chemical terrorism. The frequency and deadliness of
biological attacks has, thankfully, been limited; much of which can be attributed to the technical complexity or
(DIYbio)
movement
more deadly ones will inevitably increase . During the last half century terrorist
organizations have consistently had an interest in using biological weapons as a means of
potentially
attacking their targets, but only few have actually made a weapon and used it. The attraction is that terrorist
activities with biological weapons are difficult to detect and even more difficult to attribute without a specific
perpetrator claiming responsibility. Since 1971 there have been more than 113,113 terrorist attacks globally and 33
of them have been biological. The majority of bio-terrorism incidents recorded occurred during the year 2001 (17 of
the 33); before 2001 there were 10 incidents and since 2001 there were 6 (not counting the most recent Ricin
attacks). The lack of a discernable trend in use of bio-terrorism does not negate the clear intent of extremist
organizations to use biological weapons. In fact, the capacity to harness biological weapons more effectively today
only increases the risk that they will successfully be employed.
the instances where biological attacks had the potential to do the most harm (e.g., Rajneeshees cults Salmonella
attacks in 1984, Aum Shinri Kyos Botulinum toxin, and Anthrax attacks in the early 90s) included non-state actors
with access to large amounts of funding and scientists. Funding and a cadre of willing scientists does not guarantee
The assertion was thus made that biological weapons are not only
expensive, they require advanced technical training to make and are even more
difficult to effectively perpetrate acts of terrorism with. While it is difficult to determine with certainty
success though.
whether the expense and expertise needed to create biological weapons has acted as a major deterrent for groups
thinking of obtaining them, many experts would argue that the cost/expertise barrier makes the threat from
biological attacks extremely small. This assertion is supported by the evidence that the vast majority of attacks
have taken place in Western countries and was performed by Western citizens with advanced training in scientific
In the past decade the cost/expertise assertion has become less accurate .
there are a number of very dangerous and motivated
organizations that have or are actively pursuing biological weapons. The largest and most
research.
outspoken organization has been the global Al Qaeda network, whose leaders have frequently and passionately
called for the development (or purchase) of Weapons of Mass Destruction (WMD). The principal message from Al
Qaeda Central and Al Qaeda in the Arabian Peninsula (AQAP) has included the call to use biological WMDs to
terrorize Western nations. Al Qaeda has had a particular focus on biological and nuclear weapons because of their
potential for greatest harm. Osama Bin Laden, Ayman al-Zawahiri and Anwar al-Awlaki have all called for attacks
using biological weapons, going so far as to say that Muslims everywhere should seek to kill Westerners wherever
possible and that obtaining WMDs is the responsibility of all Muslims. Before the US-led invasion of Afghanistan, Al
Qaeda had spent significant funds on building a bio-laboratory and had begun collecting scientists from around the
world; however, the Afghanistan invasion and subsequent global War on Terrorism is thought to have disrupted their
disruption does
not appear to have changed the aggressive attitude towards obtaining WMDs (e.g.,
more recently U.S. Intelligence has been concerned about AQAP attempting to make
Ricin). The emergence of synthetic biology and DIYbio has increased the likelihood
capabilities and killed or captured many of their assets. Despite the physical setbacks, this
that Al Qaeda will succeed in developing biological WMDs . The low cost and
significantly reduced level of necessary expertise may change how many nonstate actors view bio logical weapons as a worthwhile investment.
suddenly anyone can make a weapon or that it is easy. To the contrary making an effective biological weapon will
still be difficult, only much easier and cheaper than it has been in the past.
technology are made, it is important that the international community begin to formulate policy that protects
privacy, new regulations at both the state and the federal level have been proposed in the USA, e.g., Health
Insurance Portability and Accountability Act (HIPAA).
incidents of medical identity theft. The 2013 Survey on Medical Identity Theft (also
conducted by the Ponemon Institute) estimated a 19 per cent increase in
medical identity theft victims year-to-year.39 Relatively few states include
health data within their definition of the personal information subject to breach
notification. Others, true to the US sector-based approach to privacy regulation,
exclude data covered by, say, HIPAA or the Gramm-Leach-Bliley Act of 1999
(GLBA).41 HITECH introduced two closely related breach notification regimes. The
first, introduced by section 13402, requires HIPAA covered entities and HIPAA BAs to
provide notification following a breach of unsecured protected health
information.44 The second, courtesy of section 13407, imposes a similar duty on
vendors of personal health records (PHR) 45 and their third party service providers
46 with regard to Unsecured PHR Identifiable Health Information.47 Rulemaking
authority and enforcement are vested in the HHS regarding the former and the
(Federal Trade Commission) FTC regarding the latter. The regulation of PHRs is a
limited (but ultimately unsuccessful) attempt to expand health data
protection from a narrow sector provider based model (e.g., information held by a
covered entity) to a data-type based model. Unfortunately it stopped short of a
broad datatype model (e.g., by protecting the data itself held by any data
custodian), limiting the custodian cohort to PHR providers.49 It is an interesting
question why HITECH added a breach notification data protection model. Certainly
medical identity theft was being raised as an issue.50 As likely this rethinking of the
approach to data protection may have been triggered by the expansion of personal
health records services offered by non-health companies such as Google Inc.51
Maybe the HITECH architects could not agree on a way to open up the broader and
established HIPAA model to apply to nontraditional custodians of health data (BAs
aside) and so had to settle on a new but limited data protection model as the
legislative alternative. Notwithstanding, the result was that HITECH authorized
regulatory activity by the FTC that would mirror the work of HHS in the more
narrowly defined, traditional health space. Ironically, however, by the time HITECH
was passed the PHR business was slowing and Google Health, the PHR poster-child,
soon would be closed.52
various sources of threats to information privacy and security. Recent policy-based studies (such as NRC, 1997;
Rindfleisch, 1997) broadly categorise privacy threats, or source of information security, into two areas: 1
organisational threats that arise from inappropriate access of patient data by either
internal agents abusing their privileges or external agents exploiting a vulnerability
of the information systems 2 systemic threats that arise from an agent in the information flow chain
exploiting the disclosed data beyond its intended use (NRC, 1997). Organisational Threats: These threats
assume different forms, such as an employee who accesses data without any
legitimate need or an outside attacker (hacker) that infiltrates an organisations information
infrastructure to steal data or render it inoperable. At the outset, these organisational threats could be
accessing information about a fellow employee to determine possibility of a sexually transmitted disease or medical
personnel accessing potentially embarrassing health information about a celebrity and transmitting it to the media).
Data breach by insider: Insiders access patient information and transmit it to outsiders for
profit or revenge. Data breach by outsider with physical intrusion: An outsider enters the
physical facility either by coercion or forced entry and gains access to the system.
Unauthorised intrusion of network system: An outsider, including former employees ,
patients, or hackers, intrudes into an organisations network from the outside to gain
access to patient information or render the system inoperable . Systemic Threats: Etzioni
(1999), in discussing the limits to privacy, observed that a major threat to patient
privacy occurs, not from outside of the information flow chain, but from insiders who
are legally privileged to access patient information . For example, insurance firms may deny life
insurance to patients based on their medical conditions, or an employer having access to employees medical
records may deny promotion or terminate employment. Patients or payer organisations may incur financial losses
from fraud including upcoding of diagnoses or for rendering medically unnecessary services.
Technological advancements in information systems "may provide a reason for institutionalizing privacy protections
in situations where the risk of harm did not previously justify writing such protections into law." 6 6
Now that EHR software has become a large part of the medical industry,
experts have turned their gazes back to an issue that dominated the discussion when federal
agencies first started pushing the platform as reform alternative. The question of how EHRs affect the
physician-patient relationship can seem simple at times - more screens separating clinicians from their
offices.
patients can only seem wrong - but, as EHR Intelligence explained, the underlying factors may point to a different
and more positive interpretation for EHRs in the workplace. Office manners The doctor-patient relationship goes
all the way back to the days when house calls and personal physicians were only the domain of the super wealthy.
every patient has a right to expect their doctors to be open, polite, informative,
and, most of all, confidential. Such a natural relationship fosters trust between both
parties, and when outpatient treatments are the only ones possible, this level of mutual respect is necessary for
both sides to move toward a positive care outcome. However, with the rise of EHRs, especially on mobile
devices, creating a meaningful doctor-patient relationship isn't as easy as it used to
be. In an interview with EHR Intelligence, James Avallone, director of physician research for Manhattan Research,
Today,
explained that EHR use is most certainly up, but its impact on the personal dynamics between patients and doctors
is much less clear. "Whether it is too much or too little, it is difficult for us to say from our perspective," Avallone
said. "In the past four to five years, we have seen a fair share of complaints in terms of the efficiency of EHRs and
how [they are] changing bedside manners for physicians overall. I do think we are starting to see some efficiencies
come about in terms of efficient use of these platforms and that includes at the point of care. It is certainly
something that physicians are getting used to as it becomes more ingrained in their day-to-day behaviors. They
have had more time to streamline workflow and that is something that we are seeing in terms of how these devices
are being used at the point of care." Avallone noted that research from a recent Manhattan study found that 66
percent of physicians self-reported as being more efficient with their EHRs than in the past. While part of this may
be due to a greater sense of familiarity with the product and how to fit it into workflows, EHR vendors have also
caught up with the trends of the day by developing software that intuitively meshes with physicians' daily tasks.
minor annoyance While EHRs may be an easy target for opponents of the technology, studies show that
EHRs are not a top concern among physicians who are worried about losing the
trust and goodwill of their patients. According to a 2013 study published in Health Affairs, only 25.8
percent of physicians reported that EHRs were threatening the doctor-patient relationship. Administrative burdens
like the ICD-10 transition and HIPAA compliance regulations, on the other hand, were noted by more than 41
percent of those surveyed. If industry experts are truly concerned about protecting the quality of the doctor-
highlighted during discussions with patients to show them just how powerful it can be. From there,
cited as the legal reason for prohibiting access, of course, but thats just an excuse.
Absent data security (clearly evident) there is no privacy and the real reason
masquerading behind these false claims isnt privacy protection its revenue
protection. This isnt just hospitals. The data battle for many patients encompasses
medical device manufacturers, pharmaceutical companies and electronic health
record vendors too. Our collective rights as patients are entirely secondary if at
all. Heres one example that appeared just yesterday in the New York Times
Medical Records: Top Secret (by Elisabeth Rosenthal). The story outlines the
continuing case of Mr. Drier a patient Ms. Rosenthal wrote about previously who
was billed $117,000 after a 3hour neck surgery. Mr. Driers efforts to get his health
record (for ongoing management of his health condition) resulted in this summary:
The six-week ordeal included requests that needed to be made via regular mail,
numerous phone calls, consent forms and an estimate for copying fees that totaled
$100. This was topped off by an actual visit to the hospital by Mr. Drier, who sat in
an office until he had paper documents in hand. The problem is enormous and
longstanding. The above example is simply one case that highlights what little
progress weve made in the course of 5 years. I reference that timeframe because
this last September marked the 5year anniversary of Dave deBronkarts battle cry
at the Medicine 2.0 event in Toronto. He opened his keynote with this slide. Working
with his physician Dr. Danny Sands he was finally able to download his health
record electronically. The data that came into view, however, was largely based on
billing records and loaded with inaccuracies (including the fact that an xray from
2003 identified him as a 53 yearold woman). He summarized his experience with
transferring his health data into Google GOOGL +1.71% Health (now defunct) this
way: In other words, the data that arrived in Google Health was essentially
unusable. Dave deBronkart Imagine someone had been managing your data, and
then you looked April, 2009 Hugo Campos is another example. Hugo continues to
work tirelessly on getting access to the data from the cardiac defibrillator inside his
own chest. His TEDxCambridge talk highlights his dilemma and his ongoing battle
with Medtronic MDT -0.73% for access to the data his own heart generates again
to manage his own health. Like other device manufacturers, Medtronic believes they
should own the data and patients who actually generate the data have no legal
rights. The ICD device collects a lot of data about its own function and about the
patients clinical status. Its a pretty complex little computer, but unfortunately,
none of this very valuable data is made available to the patient who originates it.
The best we can do is get a print-out or a hardcopy of an interrogation report
(typically at 6 or 12 month intervals). These reports are designed for doctors not
really for patients so a lot of patients are discouraged from even getting this
information. Its hard to read. Hugo Campos TEDxCambridge 2011 Earlier this
year, I wrote about Anna McCollisterSlipp and her battle with the data that she
needs to manage her Type 1 diabetes. So I have all of this incredible information
literally 24/7 not just from my prescription medical devices but also from my
Fitbit, from a Bluetooth blood pressure monitor, from my digital scale and from a
variety of different iPhone apps that are used for nutrition tracking etc. None of it
connects. Theyre all in completely different data streams, and even though each of
them provides something that would be an incredibly vital element for me to truly
understand how to manage my disease, how to predict when I need to change
Beth Seidenberg (M.D. general partner with Kleiner Perkins Caufield & Byers)
November 2014 You Should Share Your Health Data: Its Value Outweighs the
Privacy Risk http://www.wired.com/2014/11/on-sharing-your-medical-info/
when used at a clinic, says Wright. At this stage in the research, Anderson and
Wright are trying to learn more about the physical and chemical processes that
allow their compounds to penetrate the armor-like coating around CREs when so
many others have failed. Understanding why their compounds are working may
allow them to apply the same biological chemistry to different compounds that
could be used to fight other persistent infections. Associate professor of pharmacy
practice Jeffrey Aeschlimann from UConn Health is helping with the CRE drug
characterizations. University of Montana professor of chemistry Nigel Priestley is
assisting with testing in early animal pre-clinical trials. Right now, what makes our
compounds attractive is that they seem to have a very low rate of resistance,
says Wright. Weve made compounds that are very hard for these CREs to fend
off.
Squo solves
Anne Trafton (writer for the MIT News Office) September 21, 2014 Battling
superbugs http://newsoffice.mit.edu/2014/fighting-drug-resistant-bacteria-0921
In recent years, new strains of bacteria have emerged that resist even the most
powerful antibiotics. Each year, these superbugs, including drug-resistant forms of
tuberculosis and staphylococcus, infect more than 2 million people nationwide, and
kill at least 23,000. Despite the urgent need for new treatments, scientists have
discovered very few new classes of antibiotics in the past decade. MIT engineers
have now turned a powerful new weapon on these superbugs. Using a gene-editing
system that can disable any target gene, they have shown that they can selectively
kill bacteria carrying harmful genes that confer antibiotic resistance or cause
disease. Led by Timothy Lu, an associate professor of biological engineering and
electrical engineering and computer science, the researchers described their
findings in the Sept. 21 issue of Nature Biotechnology. Last month, Lus lab reported
a different approach to combating resistant bacteria by identifying combinations of
genes that work together to make bacteria more susceptible to antibiotics. Lu hopes
that both technologies will lead to new drugs to help fight the growing crisis posed
by drug-resistant bacteria. This is a pretty crucial moment when there are fewer
and fewer new antibiotics available, but more and more antibiotic resistance
evolving, he says. Weve been interested in finding new ways to combat antibiotic
resistance, and these papers offer two different strategies for doing that. Cutting
out resistance Most antibiotics work by interfering with crucial functions such as cell
division or protein synthesis. However, some bacteria, including the formidable
MRSA (methicillin-resistant Staphylococcus aureus) and CRE (carbapenem-resistant
Enterobacteriaceae) organisms, have evolved to become virtually untreatable with
existing drugs. In the new Nature Biotechnology study, graduate students Robert
Citorik and Mark Mimee worked with Lu to target specific genes that allow bacteria
to survive antibiotic treatment. The CRISPR genome-editing system presented the
perfect strategy to go after those genes. CRISPR, originally discovered by biologists
studying the bacterial immune system, involves a set of proteins that bacteria use
to defend themselves against bacteriophages (viruses that infect bacteria). One of
these proteins, a DNA-cutting enzyme called Cas9, binds to short RNA guide strands
that target specific sequences, telling Cas9 where to make its cuts. Lu and
colleagues decided to turn bacterias own weapons against them. They designed
their RNA guide strands to target genes for antibiotic resistance, including the
enzyme NDM-1, which allows bacteria to resist a broad range of beta-lactam
antibiotics, including carbapenems. The genes encoding NDM-1 and other antibiotic
resistance factors are usually carried on plasmids circular strands of DNA
separate from the bacterial genome making it easier for them to spread through
populations. When the researchers turned the CRISPR system against NDM-1, they
were able to specifically kill more than 99 percent of NDM-1-carrying bacteria, while
antibiotics to which the bacteria were resistant did not induce any significant killing.
They also successfully targeted another antibiotic resistance gene encoding SHV-18,
a mutation in the bacterial chromosome providing resistance to quinolone
antibiotics, and a virulence factor in enterohemorrhagic E. coli. In addition, the
researchers showed that the CRISPR system could be used to selectively remove
specific bacteria from diverse bacterial communities based on their genetic
signatures, thus opening up the potential for microbiome editing beyond
antimicrobial applications. To get the CRISPR components into bacteria, the
researchers created two delivery vehicles engineered bacteria that carry CRISPR
genes on plasmids, and bacteriophage particles that bind to the bacteria and inject
the genes. Both of these carriers successfully spread the CRISPR genes through the
population of drug-resistant bacteria. Delivery of the CRISPR system into waxworm
larvae infected with a harmful form of E. coli resulted in increased survival of the
larvae. The researchers are now testing this approach in mice, and they envision
that eventually the technology could be adapted to deliver the CRISPR components
to treat infections or remove other unwanted bacteria in human patients. This work
expression of the antibiotics cellular targets (Bollenbach and Kishony 2011) or by reductions in bacterial growth
their occurrence, probably because of the vulnerability of the trusting party (R.L.
Jackson, unpublished manuscript).
Americans count among the least trusting of the medical profession, according to an
international health care survey . The findings, which appeared in a recent issue of the New England
Journal of Medicine, show significant levels of suspicion of doctors, especially among those who make less than
$30,000 annually. Researchers studied public health polls dating back four decades, including one conducted by a
consortium of universities between 2011 and 2013 during which people in 29 countries answered survey questions.
In that poll, 58 percent of Americans said they trust the medical profession, placing the United States in 24th place
with Croatia. It fits with decades of data on the American publics trust in institutions, in general, Michael
Gusmano, a scholar at the Hastings Center, a Garrison, N.Y.-based research institute that focuses on health care,
members of the medical field often seem more concerned about protecting their financial interests than caring for
field in general. In exchange for their endorsement of prescription medications, physicians receive free samples and
gifts that include coffee mugs emblazoned with the drug companys logo, tickets to sporting events, expensive
dinners, and trips to exotic destinations. At the peak of Big Pharmas profitable relationship with the medical
industry in 2007, more than 100,000 representatives made visits to more than 650,000 physicians across the
country. This can sometimes have a direct effect on patients. A Centers for Disease Control and Prevention (CDC)
study in August, for example, found that doctors in hospitals with a strong black patient base encouraged
breastfeeding to expectant mothers at a rate 15 percentage points less than that of their white counterparts, due in
succumbed criticized the medical establishment, saying nurses at Presbyterian Hospital in Dallas treated Duncan
for days in an open space in the emergency room under constantly changing protocols and without sufficient
protective gear. The controversy has discouraged some Americans from trusting what CDC officials are saying
indicators of Ebolas impact in the United States. There are other examples of how some Americans mistrust of the
medical profession undermines public health. An increasing number of parents are skipping or delaying their
childrens recommended vaccination, due in part to a belief that the injections cause autism and other sicknesses.
Members of the scientific community beg to differ, especially since vaccinations in the last two decades have
prevented nearly 700,000 deaths. But the parents who choose to delay their kids vaccines dont trust scientists
opinions on the subject. The study recently published in the New England Journal of Medicine does have another
significant finding: Even when Americans are skeptical of the medical industry as a whole, they do trust their own
doctor. So information about things like Ebola and vaccinations might need to come from those immediate sources
rather than national spokespeople.
made the information public except for one, the sequence for ApoE, a gene that
has a variant linked to an increased risk of Alzheimers disease. Researchers
noticed, though, that they could still figure out if Dr. Watson had that variant by
examining the DNA on either side of the gene he had removed. They did not reveal
whether he had it. With so many questions about the privacy and security of genetic
data, researchers wonder what research subjects should be told. Leaks and
identification of study subjects will never be completely avoidable, said George
Church, a Harvard geneticist. And as much as investigators might like to find a way
to keep genetic data secure and private, he does not think there is an exclusively
technical solution. If you believe you can just encrypt terabytes of data or
anonymize them, there will always be people who hack through that, Dr. Church
said. He believes that people who provide genetic information should be informed
that a loss of privacy is likely, rather than unlikely, and agree to provide DNA with
that understanding. Other researchers say the idea is not far-fetched, and some
suggest that scientists be licensed before they are given access to genetic
databases, with severe penalties for those who breach privacy. My fear is not so
much that someone will take everyones genomes and put them on the Web, Dr.
Gerstein said. It is that a graduate student in some lab somewhere will navely post
bits of genomes on his Facebook page. The idea is that before he could get access
to genomes, he would be taught he cant do that. And if he did he would lose his
license. The amount of genetic data that has been gathered so far is minuscule
compared with what will be coming in the next few years, Dr. Altshuler noted,
making it important to address the problems before the data deluge makes them
worse. We see substantial issues, he said. We want to have serious discussions
now.
Genomic data breaches happen all the time- the health system
does not have enough protections in place to secure private
genetic information
McEwen et al 13 (Jean E. McEwen, Ethical, Legal, and Social Implications
Program, Division of Genomics and Society, National Human Genome Research
Institute, National Institutes of Health,Ethical, Legal, and Social Implications
Program, Division of Genomics and Society, National Human Genome Research
Institute, National Institutes of Health. Joy T. Boyer, Senior Program Analyst,
and Kathie Y. Sun, Program Analyst. Evolving Approaches to the Ethical
Management of Genomic Data. February 28, 2013.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665610/)//EMerz
The genetic studies and test protocols that dominated the field 1520 years ago
were generally highly targeted, and tended to view the risks to participants or
patients (apart from the physical risks associated with blood drawing) as
straightforwardly informational [1719]. Thus, consent materials in use prior to the
mid-2000s, if they mentioned non-physical risks at all, tended to focus on the
potential for breach of privacy, with insurance and employment usually listed as the
two areas of main concern [2022]. Data security measures of the time were, by
todays standards, remarkably low tech, often consisting of little more than coding
samples and data and storing samples and data in locked freezers and cabinets.
Still, consent forms, if they addressed the issue at all, typically described the risk of
a security breach as low; at the time that assessment seemed reasonably accurate,
predating as it did the development of massive, web-accessible genomic databases
and expanded data sharing norms. Early consent forms rarely addressed the issue
of whether individual findings from studies would be returned to participants [20,
21]. The usual default presumption was that they would not be [23], because most
findings emanating from studies of the time interrogated only limited regions of the
genome, so the likelihood of generating incidental findings (apart from occasional
evidence of undisclosed adoption or misattributed paternity [24]) was relatively low.
Another feature of early consent forms was their characteristically narrow scientific
scope [8, 20, 21]. Most described only the immediate study for which samples were
being collected or the specific disease being analyzed; although the possibility of
sharing with close collaborators working on the same disease was sometimes
mentioned, obtaining broad consent to an unspecified range of future uses was the
exception, not the norm. Often, consent documents were simply silent about
plans for any future sharing, and in such cases, the absence of an explicit
prohibition against sharing was generally interpreted (or, at least over time
came to be interpreted) as tacit permission to share [23]. In 1994, longpercolating concerns among bioethicists about the practice of using stored, linkable
samples without obtaining new consent from those from whom they had been
obtained culminated in the publication of a highly influential paper that
recommended against continuing this practice [25]. Following this recommendation,
consent documents gradually began to be written with greater specificity about
whether, with whom, and for what purposes, samples and data would be shared. In
practice, however, the recommendation was often interpreted as applying only to
prospectively collected samples. Thus, as was recently called to public attention in a
best-selling book, archived samples collected under widely varying and sometimes
questionable consent conditions and cell lines derived from such samples - are
often still being used today.
earlier version of myself") haven't come true, some now argue that we need federal
legislation for symbolic reasons, to protect people from even the theoretical risk of
genetic discrimination. This "what harm does it do?" argument is OK, says William
Nowlan, chief medical officer of the National Life Insurance Co., Montpelier, Vt., who
has written widely on the myth of genetic discrimination. But then let's admit that
the Senate bill addresses a problem that exists solely in the public's imagination. As
far as I can tell, the bill's only real benefit would be to allay the fears of people who
reject genetic tests in the belief that a positive result could make them uninsurable
and unemployable. That's a worthwhile goal. But it comes at a cost. By enshrining
genetic status in federal law, we reinforce the widespread and pernicious
belief that DNA is destiny. It isn't. Risk genes for common diseases aren't like
those for the exceedingly rare Huntington's or Tay-Sachs, where carrying the gene
means you definitely will get the disease. Instead, risk genes are low in what
biologists call "penetrance:" They increase your chance of developing the disease,
but to nothing like 100%. In one fascinating 2000 study, Swedish scientists
calculated that genes account for less than half of the risk of developing 11
common cancers. The cancers with the highest genetic component, the study
found, are prostate (42%) and colorectal (35%). A woman's risk of getting breast
cancer if her identical twin does is only 13%. Supporters of the genetic
discrimination bill should make clear that what they want to guard against is no
more than a theoretical risk. They should make equally clear that the risk genes
they're so worried about are not all they're cracked up to be.
comparably high legibility threshold [24]. Moreover, empirical research has shown
the likelihood that genetic information and its related research may be seen as
problematic, but it appears that people perceive other types of information as being
sensitive, as well, and that their concerns revolve around the concrete context in
which data and materials are used and the intention behind a particular inquiry
Ricky Jackson of Ohio spent 341,640 hours, or 39 years, behind bars before he was exonerated. Just a teenager
when he was convicted, he was nearly a senior citizen when he was released. Jonathan Fleming was serving the
25th year of a 25-year sentence when he was finally exonerated after a wrongful conviction. Glenn Ford, on death
row for 30 years in Louisiana, was 64 years old when he was released and was exonerated. Stricken with lung
Jump below the fold for more. But the conversation should not end at our conclusion that these wrongful convictions
are a travesty. It appears, though, that an entire section of America refuses to believe that police or prosecutors can
ever do any wrong at all. Except they do. Often. Detective Louis Scarcella of the NYPD is accused of framing
suspects, forcing fake confessions, and using the same single eyewitness for multiple murders. Many men who were
wrongfully convicted under his watch have recently been exonerated and 50 of his cases are under review. Chicago
has now been called the "false confession capital" as more and more details are uncovered on how the city's police
officers are torturing men and women to confess to crimes they didn't commit. They were so good at it, in fact, that
Detective Richard Zuley was brought from Chicago to Guantanamo Bay to directly oversee one of the most brutal
torturing operation in modern history. The prosecutor of Glenn Ford, shipped off to death row at Angola State Prison
in Louisiana in 1984, now openly admits that he was "sick ... arrogant, judgemental, narcissistic and very full of
myself" when he sought the wrongful conviction of Ford, who spent 30 years of his life in one of the most brutal
prisons in the world. Four police officers in Fort Lauderdale, Florida, were just caught sending texts to one another
about "killing nigg*rs" and giving them the "early death penalty." This is not okay. It's wrong. Our justice system is
altogether broken. This brokenness, though, must not be understood in some abstract way. It's broken because the
people leading it are often sick, disturbed racists who care very little for those on the receiving end of their
sickness. It's not good enough to simply give wrongfully convicted men an insufficient check and an apology.
We
must repair the broken system so these instances go away for good.
technique, and he says that Canada should consider it, too. "Why would you have
a law that would keep you from something that can solve crimes?" he told
ctvbc.ca. "It'll help make the world a safer place."
Solvency Circumvention
Federal oversight cant minimize health surveillance- the
biggest offenders are private businesses that use big data
Terry 14 (Nicolas P. Terry. Big Data Proxies and Health Privacy Exceptionalism.
2014. P. 13-16
https://www.ftc.gov/system/files/documents/public_comments/2014/01/0000489091.pdf)//EMerz
Big data is so named because of its unprecedented volume and for its complexity,
diversity, and timeliness. Big data refers not only to the collection and storage of
extremely large data sets but also the data mining and predictive analytic routines
that process the data, the latter being understood as [t]echnology that learns from
experience (data) to predict the future behavior of individuals in order to drive
better decisions.74 Essentially big data is the latest type of business intelligence
(BI), or, to frame it slightly differently, the latest BI analytics are what extract value
from big data. 75 Not surprisingly, MBA-speak business jargon dominates the space.
Thus, according to Gartner, Inc., Big data is high-volume, -velocity and -variety
information assets (sic) that demand (sic) cost-effective, innovative forms of
information processing for enhanced insight and decision making.76 It is important
not to underestimate one of these three propertieshigh-variety. Big data does not
use structured databases (or at least is not as reliant on them as previous
generation systems such as credit reporting) but is capable of absorbing highvariety data. Data sources (or data pools) continually change and expand; yet big
data is seems adept at digesting them. As described in a recent report by the
Centre For Information Policy Leadership, While traditionally analytics has been used
to find answers to predetermined questions, its application to big data enables
exploration of information to see what knowledge may be derived from it, and to
identify connections and relationships that are unexpected or were previously
unknowable. When organisations employ analytics to explore datas potential for
one use, other possible uses that may not have been previously considered often
are revealed. Big datas potential to yield unanticipated insights, the dramatically
low cost of information storage and the rapidly advancing power of algorithms have
shifted organisations priorities to collecting and harnessing as much data as
possible and then attempting to make sense of it.77 The analytics of big data seek
to predict the behavior not only of populations or cohorts but also of individuals. In
Predictive Analytics: The Power to Predict Who Will Click, Buy, Lie, or Die, computer
scientist Eric Siegel explained the distinction as follows: Forecasting makes
aggregate predictions on a macroscopic level. How will the economy fare? Which
presidential candidate will win more votes in Ohio? Whereas forecasting estimates
the total number of ice cream cones to be purchased next month in Nebraska,
predictive technology tells you which individual Nebraskans are most likely to be
seen with cone in hand.78 In the context of health information the business
intelligence grail is to identify and exploit a patients differential health status.
According to Neil Biehn with such segmentation organizations can more easily
identify anomalous buying behavior and make intelligent product and offer
recommendations that are statistically more likely to be purchased. Biehn
continues, If two customers are alike but not buying the same products, the data
analysis can advise which opportunities the sales team might be missing,
concluding [t]his is the type of Big Data viability that moves the needle in the real
world.79 The privacy implications of individuated big data analysis are profound.
Beyond the expropriation or using objections to such data collection and
processing, such as Commissioner Brills critique quoted at the beginning of this
article,80 the computer modeling of predictive analytics predicts a world of
dehumanizing data determinism, described by FTC Chairwoman Edith
Ramirez as the judgment of persons not because of what theyve done, or what
they will do in the future, but because inferences or correlations drawn by
algorithms suggest they may behave in ways that make them poor credit or
insurance risks, unsuitable candidates for employment or admission to schools or
other institutions, or unlikely to carry out certain functions.81 Finally, there is the
Doomsday scenarioa big data breach. The industrial scale data-warehousing
model is the antithesis of the silo model of data storage used in the preinformation age. The lack of data liquidity (with all of its informational
disadvantages) inherent in that model meant that there was little profit or harm in
an isolated security breach. The opposite is true with big data storage. However,
there are reports that big data brokers are not immune from the same security
breaches that are plaguing other businesses.82
Individuals willingly give up their health records by using nonprotected mediums- means state legislation cant solve
Terry 14 (Nicolas P. Terry. Big Data Proxies and Health Privacy Exceptionalism.
2014. P. 19-21
https://www.ftc.gov/system/files/documents/public_comments/2014/01/0000489091.pdf)//EMerz
Ironically one of the greatest threats to an individuals health privacy is . . .
the individual. One of the first examples of theretofore HIPAA-protected data
migrating to HIPAA-free space was during President George W. Bushs administration
at a time when the slowing of the administrations provider-curated EMR program
coincided with the launching of PHR platforms by Google and Microsoft.96 As a
result the HITECH Act architects attempted to protect for the first time health data
that migrated from a protected to an unprotected (or marginally protected) zone.
However, they chose to do so with a swiftly outmoded, downstream breach
notification model.97 In the interim different (and unregulated) technologies have
emerged that encourage patient rather than provider curation of health
data. The most obvious example is the federal governments Blue Button
technology that allows patients to download their records to their own devices. The
Blue Button approach to patient access and hence control of their health data has
become a rallying cry for many (if not all) patient privacy advocatesand has been
encouraged by President Obamas administration. 101 Indeed, then ONC National
Coordinator Farzad Mostashari announced a Blue Button Mash-Up challenge to build
software for patients designed to combine their downloaded Blue Button
information with other data sources.102 At root such patient curation of health data
bespeaks autonomy and is symbolic of patient ownership of the data. However, it
fails to take into account one practical limitationthe canonical version of the
record will remain in the providers control and one legal limitation that only the
provider-curated copy is protected by HIPAA-HITECH. In contrast, the patientcurated copy attracts little meaningful privacy protection. Well-meaning privacy
advocates should think carefully before promoting this autonomy-friendly control
model until data protection laws (not to mention patient education as to good data
practices) catch up with patient curated data. A similarly dichotomous result is likely
as the medically quantified self develops. The quantified-self movement
concentrates on personal collection and curation of inputs and performance. 103
Obviously, health, wellness and medically inflected data will likely comprise a large
proportion of such data. A similar, if less formal, scenario is emerging around health
and wellness apps on smartphones and connected domestic appliances such as
scales and blood pressure cuffs. 104 Smartphones are crammed with sensors for
location, orientation, sound and pictures that add richness to data collection.105
And there is ongoing and explosive growth in the medical apps space that seeks to
leverage such sensors. More and more we are going to demand control of
information about ourselves and generate medically inflected and core
health data about ourselves. These processes will in most cases lead to
medically inflected data that exists outside of the HIPAA-HITECH protected zone.
financing, adequate powers to avert or manage health threats, and restraints on powers to maintain respect for
personal rights and liberties.
advanced biotechnology and health care, which serve the needs of individual
patients, particularly those who can afford private health insurance. Funding for
traditional prevention and population-based services represents only a small fraction of
health spending, estimated at around 1 percent at the state level and less than 5 percent at
the federal level.1
law, said Anne-Marie Slaughter, the dean of the Woodrow Wilson School of Public and International Affairs at
Princeton. We
are losing one of the greatest bully pulpits we have ever had . From 1990
Supreme Court cited decisions of the United States
Supreme Court about a dozen times a year, an analysis by The New York Times found. In the six
years since, the annual citation rate has fallen by half , to about six. Australian state
supreme courts cited American decisions 208 times in 1995 , according to a recent study by
Russell Smyth, an Australian economist. By 2005, the number had fallen to 72. The story is
similar around the globe, legal experts say, particularly in cases involving human rights. These days,
foreign courts in developed democracies often cite the rulings of the European Court of
Human Rights in cases concerning equality, liberty and prohibitions against cruel treatment, said Harold
Hongju Koh, the dean of the Yale Law School. In those areas, Dean Koh said, they tend not to look to the
rulings of the U.S. Supreme Court. The rise of new and sophisticated constitutional courts elsewhere is
one reason for the Supreme Courts fading influence, legal experts said. The new courts are,
moreover, generally more liberal than the Rehnquist and Roberts courts and for that
reason more inclined to cite one another. Another reason is the diminished reputation of the United
States in some parts of the world, which experts here and abroad said is in part a consequence of the
Bush administrations unpopularity around the world. Foreign courts are less apt to justify their
decisions with citations to cases from a nation unpopular with their domestic
audience. Its not surprising, given our foreign policy in the last decade or so, that
American influence should be declining, said Thomas Ginsburg, who teaches comparative and
international law at the University of Chicago. Aversion to Foreign Law The adamant opposition of some
Supreme Court justices to the citation of foreign law in their own opinions also plays a
role, some foreign judges say. Most justices of the United States Supreme Court do not cite foreign
case law in their judgments, Aharon Barak, then the chief justice of the Supreme Court of Israel, wrote in
the Harvard Law Review in 2002. They fail to make use of an important source of inspiration, one
through 2002, for instance, the Canadian
that enriches legal thinking, makes law more creative, and strengthens the democratic ties and foundations of
different legal systems.
Surveillance K Links
Trying to curtail the medical surveillance state starts from the
wrong positionignoring the interaction between the self and
the collective body leads to reinforcing the biopolitics of the
state and recreates the impacts of the 1AC through risk
calculations
Baur and Olsen 9 (Susanne, professor at the University of Copenhagen, and
Jan, professor at University of Copenhagen, Observing the Others, Watching Over
Oneself: themes of medical surveillance in society
file:///C:/Users/Jessi/Downloads/3252-5562-2-PB.pdf 2009 JM)
This paper is an attempt to explore the reconfiguration of space, body and gaze in
recent biomedicine. The constellations of the body and the medical gaze and their
location in space were closely intertwined with specific epistemologies of medical
science and practice at different historical periods. Michel Foucault localized the
birth of the clinic in the spatialization of disease and bodies, which took place with
the structuring of hospitals according to nosological categories (Foucault 1963).
Inspired by Foucaults analyses of the clinical space, David Armstrong coined the
term surveillance medicine as a significant alternative model to hospital
medicine and pathology, which emerged during the 20th century around the
observation of seemingly healthy populations (Armstrong 1995: 393). Medical
thinking in terms of surveillance embraces probabilistic rationality and prediction,
which have continuously proliferated in medical research and in public health, for
instance in early diagnostics or decision-making in the clinic and in preventive
medicine. Drawing on examples from clinical diagnostics on the one hand and
population health surveillance on the other hand, we explore recent
reconfigurations of the clinical gaze in western biomedicine. In these recent forms of
diagnostic monitoring an augmented space of digital visualization and statistical
data, an abundance of numbers and images is created and the clinical gaze is being
delocalized. In large-scale epidemiological studies, health data from whole
populations are used for risk calculations that inform policy making. Both
the body and society are governed by data analyses and numerical profiling;
interventions are made in a rationality of prevention at ever earlier stages. This
paper thus refers to developments that take place within western biomedicine and
are products of the latter; in a global perspective, however, there remains a digital
divide in terms of access and availability of information technologies. Our themes
monitoring the patient-body and population surveillance can be read as
representing both poles of biopower, in the sense the term has been introduced
by Foucault: the gaze is directed both upon the individual body and the self
as well as upon the collective population body. Taking up these two poles of
biopower, we explore the digitized and transparent individual patient body of the
clinic on the one hand and the epidemiological databases originating through public
health surveillance practices on a population scale on the other hand. In doing so,
we pay particular attention to the more distributed forms of contemporary
surveillance, which go beyond the classic spatialization of the body in the clinic and
the accounts of Jeremy Benthams panopticon (Foucault 1975). Drawing on
surveillance studies, we take inspiration in the concept of panopticism and
synopticism, as proposed by Thomas Mathieson (1997). In other words, we are
asking about who is observing and who is being watched. What
constellations between individuals, bodies and data do we encounter in the worlds
of biomedicine and epidemiology? Which specific modes of knowing do such digital
assemblages bring about? What is the location of the body and knowledge on the
body is it still in the macroanatomic body or rather on the hard drive or in
population databases? How do imaging and visualization techniques mediate
medical procedures, clinical and political decision-making? What kinds of body and
control practices do we face with the data avalanches of imaging techniques and
databasing in the health sector? In exploring these questions, we will examine
selected biomedical sites and contexts in which surveillance is at work often as
taken-for granted and widely accepted if not desired practice. By exploring the
effects of surveillance from perspectives situated in the cultural studies of medicine,
this article attempts to expose the digital reconfiguration of the body as object of
medical monitoring and intervention.
land surveys and geology (Converse 1987). Different from land surveys for the
mapping of geographical space, the data patterns visualized in epidemiology refer
to multiple levels and diverse contexts. The extent and modalities in which data are
collected has differed between countries; often so-called routine data such as
demographic data on births and deaths (vital statistics) are collected for the entire
population. The Nordic countries maintain central population registries which allow
record linkage between different sectors (for example population registries, social
services and health care data). Health research relies heavily on data from these
routine administrative monitoring techniques as well as on the data recording
systems of health-related registries. Registry research has become a sub-discipline
in epidemiologic research in the Nordic countries (Mortensen 2004). Further, specific
epidemiological studies are usually conducted for representative samples of the
population, for example longitudinal follow-up studies or cross-sectional surveys.
Health surveys among representative or random samples of the population are used
to gain quick comparative snapshots of the populations health. Not only has the
anatomic atlas of the macroanatomical body been replaced by a statistical and
digitized body; at a population level health and disease are documented for
instance in national cancer atlases, as done for example in Denmark since the
1970s. Visual mapping as part of descriptive epidemiology creates new
epistemological infrastructures; the surveillant gaze takes up these new data
patterns as grids of orientation, in which one is able to navigate. More than a
metaphor the visual episteme plays is key to design and display of health statistics.
Alluding to the objectivity effects of photography, Catherine Waldby has described
epidemiological surveillance as an imaging process that is conceived to provide
accurate photographs of population health (Waldby 1996: 99). Graphs, charts and
tables visualise and spatialize data; they mediate research design and risk
communication. While as part of state administrative procedures, routine data are
recorded and stored to evaluate health and disease at the population level, it is also
new forms of accountability that drive the implementation of monitoring and
evidence-based decision-making; these in turn nurture the need for documentation,
visibility and transparency. This data hunger of quality management has
contributed to the vast bureaucracies that accompany medical practice
and health care systems.
is deemed a security threat that concerns national and international stability, it may lead political leaders to call
on military forces to confront the threat. Militaries may be useful for traditional threats, but they may be poorly
public health organizations. They may also have the logistical and organizational capabilities to facilitate rapid
deployment in epidemic regions and the communication technologies to communicate with WHO officials in a
timely manner.74 Indeed, in developing countries, the military may be the only organization with these
of the global infectious disease surveillance system is linked to the Department of Defense (DoD). In the 1990s,
the U.S. government established the Global Emerging Infectious Surveillance and Response System (GEIS). The
system set up mobile laboratories that could quickly respond to disease outbreaks around the world. Interestingly,
GEIS comes under the administrative aegis of the DoD, not one of the diplomatic or humanitarian bureaucracies
in the government. Their location in the DoD, as opposed to the United States Agency for International
Development (USAID) or Center for Disease Control (CDC) demonstrates how seriously the United States views the
Surveillance becomes
inextricably linked with the military and the deployment of military
personnel in foreign countries. Fears arise that this could cloud the states response,
leading to rely too heavily on military, as opposed to health, means. It also could
response to infectious disease as a key national security strategy.76
potentially place the military in a strong position for ensuring and regulating the populations health. Pandemic
influenza preparations have further stoked fears about the links between biopolitical surveillance and the role of
the military. In 2005, U.S. President Bush released the document National Strategy for Pandemic Influenza. The
document focuses on preparedness, surveillance, and containment. This strategy calls upon government officials
at the local, state, and federal government to develop mitigation strategies, build greater lines of communication
between officials, and collaborate with international partners. To contain an outbreak, the strategy acknowledges
that military capabilities may be used domestically to provide additional medical facilities and to engage in
infrastructure-sustainment activities.77 Bush expanded upon the militarys potential role during a press
conference. He remarked: If we had an outbreak somewhere in the United States, do we not then quarantine that
part of the country, and how do you then enforce a quarantine? Whenits one thing to shut down airplanes; its
another thing to prevent people from coming in to get exposed to the avian flu. And who best to be able to effect
a quarantine? One option is the use of a military thats able to plan and move.78 Some have seized upon this
military in providing medical services, enforcing quarantines, and ensuring continuity of government and
economy. Some critics of this program have argued that it essentially allows for the declaration of martial law.79
exacerbate an epidemic.80 Irwin Redlener, the dean of Columbia Universitys Mailman School of Public Health,
called the militarized aspect of the governments response extraordinarily draconian and equated it with martial
law.81 More bombastically, Michael Osterholm, an advisor to the U.S. government on its pandemic flu
preparations, paints the following doomsday scenario: Border security would be made a priority, especially to
protect potential supplies of pandemic-specific vaccines from nearby desperate countries. Military leaders would
have to develop strategies to defend the country and also protect against domestic insurgency with armed forces
that would likely be compromised by the disease.82 He goes on to discuss the fallout from the governments
failure to properly securitize pandemic influenza: Someday, after the next pandemic has come and gone, a
commission much like the 9/11 Commission will be charged with determining how well government, business, and
public health leaders prepared the world for the catastrophe when they had clear warning. What will be the
verdict?83 Osterholms prognostication envisions widespread looting and the need for roaming militias to ensure
access to drug supplies as he envisions millions of people dying. He speaks strongly about the need to protect our
borders to prevent people from coming to the United States to get Americas drugs. This also suggests that
pharmaceutical manufacturing capabilities may become a national security issue, as could access to antiretroviral
drugs in developing countries. Garrett notes that pharmaceutical patent protections are stoking anti-Western
linked increasing adherence with universal standards embodied within increased health surveillance with a loss of
sovereignty, attempts to weaken the state, and domination by Western states.
***Impact Framing***
No War - General
No risk of global war economic costs, democracy, treaties,
interdependence and multiple other reasons check conflict escalation
[John Aziz, former economics and business editor @ The Week. Don't worry: World
War III will almost certainly never happen 2014]
Next year will be the seventieth anniversary of the end of the last global conflict. There have been points on that timeline such as
the Cuban missile crisis in 1962, and a Soviet computer malfunction in 1983 that erroneously suggested that the U.S. had attacked,
and perhaps even the Kosovo War in 1999 when a global conflict was a real possibility. Yet today in the shadow of a flare up
which some are calling a new Cold War between Russia and the U.S. I believe the threat of World War III has almost faded into
nothingness. That is,
world. This has meant there has been a huge rise in the volume of global trade since World War II, and especially since the 1980s.
Today consumer goods like smartphones, laptops, cars, jewelery, food, cosmetics, and medicine are produced on a global level, with
supply-chains criss-crossing the planet. An example: The laptop I am typing this on is the cumulative culmination of thousands of
hours of work, as well as resources and manufacturing processes across the globe. It incorporates metals like tellurium, indium,
cobalt, gallium, and manganese mined in Africa. Neodymium mined in China. Plastics forged out of oil, perhaps from Saudi Arabia, or
Russia, or Venezuela. Aluminum from bauxite, perhaps mined in Brazil. Iron, perhaps mined in Australia. These raw materials are
turned into components memory manufactured in Korea, semiconductors forged in Germany, glass made in the United States.
And it takes gallons and gallons of oil to ship all the resources and components back and forth around the world, until they are finally
assembled in China, and shipped once again around the world to the consumer.
nightmare. Shipping becomes more expensive due to higher insurance costs, and riskier because it's subject to
seizures, blockades, ship sinkings. Many goods, intermediate components or resources including energy supplies like coal and oil,
components for military hardware, etc, may become temporarily unavailable in certain areas. Sometimes such as occurred in the
Siege of Leningrad during World War II the supply of food can be cut off . This is why countries hold strategic
reserves of things like helium, pork, rare earth metals and oil, coal, and gas. These kinds of breakdowns were troublesome enough in
the economic landscape of the early and mid-20th century, when the last global wars occurred. But in today's ultra-globalized and
the United States with lots of land and natural resources required to adapt to a world war
practical example: If Russian oligarchs make their money from selling gas and natural resources to Western Europe, and send their
children to schools in Britain and Germany, and lend and borrow money from the West's financial centers, are they going to be
willing to tolerate Vladimir Putin starting a regional war in Eastern Europe (let alone a world war)? Would the Chinese financial
industry be happy to see their multi-trillion dollar investments in dollars and U.S. treasury debt go up in smoke? Of course, world
wars have been waged despite international business interests, but the world today is far more globalized than ever before and wellconnected domestic interests are more dependent on access to global markets, components and resources, or the repayment of
foreign debts. These are huge disincentives to global war. But what of the military-industrial complex? While other businesses might
be hurt due to a breakdown in trade, surely military contractors and weapons manufacturers are happy with war? Not necessarily. As
the last seventy years illustrates, it is perfectly possible for weapons contractors to enjoy the profits from huge military spending
without a global war. And the uncertainty of a breakdown in global trade could hurt weapons contractors just as much as other
industries in terms of losing access to global markets. That means weapons manufacturers may be just as uneasy about the
prospects for large-scale war as other businesses. Other changes have been social in nature. Obviously,
democratic
countries do not tend to go to war with each other, and the spread of liberal democracy is correlated
against the decrease in war around the world. But the spread of internet technology and social media has brought
the world much closer together, too. As late as the last world war, populations were separated from each other by physical distance,
by language barriers, and by lack of mass communication tools. This means that it was easy for war-mongering politicians to sell a
population on the idea that the enemy is evil. It's hard to empathize with people who you only see in slanted government
Today, people from enemy countries can come together in cyberspace and find out that the "enemy"
is not so different, as occurred in the Iran-Israel solidarity movement of 2012. More importantly, violent incidents
and deaths can be broadcast to the world much more easily. Public shock and disgust at the brutal reality of
propaganda reels.
war broadcast over YouTube and Facebook makes it much more difficult for governments to carry out large scale military
aggressions. For example, the Kremlin's own pollster today released a survey showing that 73 percent of Russians disapprove of
Putin's handling of the Ukraine crisis, with only 15 percent of the nation supporting a response to the overthrow of the government
in Kiev. There are, of course, a few countries like North Korea that deny their citizens access to information that might contradict the
government's propaganda line. And sometimes countries ignore mass anti-war protests as occurred prior to the Iraq invasion of
resources, money, friends, sexual partners, empire, prestige and deciding to take it by force. Or they arise as a result of grudges
or hatreds from previous wars of the first kind. We don't quite live in a superabundant world yet, but the long march of human
ingenuity is making basic human wants like clothing, water, food, shelter, warmth, entertainment, recreation, and medicine more
other people's stuff. But the tendency toward inertia is strong. It is clear at least that the
new world war between nations or empires that three generations of children have been raised into continue to diminish.
nuclear weapons have not been used since 1945 . Second, there's never
been a nuclear, or even a nonnuclear, war between two states that possess them .
observations. First,
Just stop for a second and think about that: it's hard to overstate how remarkable it is, especially given the singular
viciousness of the 20th century. As Kenneth Waltz, the leading "nuclear optimist" and a professor emeritus of
political science at UC Berkeley puts it, "We now have 64 years of experience since Hiroshima. It's striking and
against all historical precedent that for that substantial period, there has not been any war among nuclear states."
To understand whyand why the
next 64 years are likely to play out the same way you need
all states are rational on some basic level . Their leaders may be stupid,
petty, venal, even evil, but they tend to do things only when they're pretty sure they can
get away with them. Take war: a country will start a fight only when it's almost certain it can get what it
wants at an acceptable price. Not even Hitler or Saddam waged wars they didn't think they
could win. The problem historically has been that leaders often make the wrong gamble and underestimate the
other sideand millions of innocents pay the price. Nuclear weapons change all that by making the
costs of war obvious, inevitable, and unacceptable . Suddenly, when both sides have the ability to
turn the other to ashes with the push of a buttonand everybody knows itthe basic math shifts. Even the
craziest tin-pot dictator is forced to accept that war with a nuclear state is
unwinnable and thus not worth the effort. As Waltz puts it, "Why fight if you can't win and might lose
everything?" Why indeed? The iron logic of deterrence and mutually assured destruction is so
compelling, it's led to what's known as the nuclear peace : the virtually unprecedented stretch since
to start by recognizing that
the end of World War II in which all the world's major powers have avoided coming to blows. They did fight proxy
wars, ranging from Korea to Vietnam to Angola to Latin America. But these never matched the furious destruction of
full-on, great-power war (World War II alone was responsible for some 50 million to 70 million deaths). And since the
end of the Cold War, such bloodshed has declined precipitously. Meanwhile, the nuclear powers have scrupulously
avoided direct combat, and there's very good reason to think they always will. There have been some near misses,
but a close look at these cases is fundamentally reassuringbecause in each instance, very different leaders all
For 13
days in October 1962, the United States and the Soviet Union each threatened the other with
destruction. But both countries soon stepped back from the brink when they recognized that a
came to the same safe conclusion. Take the mother of all nuclear standoffs: the Cuban missile crisis.
war would have meant curtains for everyone. As important as the fact that they did is the reason why: Soviet leader
Nikita Khrushchev's aide Fyodor Burlatsky said later on, "It is impossible to win a nuclear war, and both sides
nucleararmed enemies slide toward war, then pull back, always for the same reasons . The
best recent example is India and Pakistan, which fought three bloody wars after independence
before acquiring their own nukes in 1998. Getting their hands on weapons of mass destruction didn't do
anything to lessen their animosity. But it did dramatically mellow their behavior. Since acquiring atomic
weapons, the two sides have never fought another war , despite severe provocations (like
realized that, maybe for the first time." The record since then shows the same pattern repeating:
Pakistani-based terrorist attacks on India in 2001 and 2008). They have skirmished once. But during that flare-up, in
Kashmir in 1999, both countries were careful to keep the fighting limited and to avoid threatening the other's vital
interests. Sumit Ganguly, an Indiana University professor and coauthor of the forthcoming India, Pakistan, and the
Bomb, has found that on both sides, officials' thinking was strikingly similar to that of the Russians and Americans in
1962. The prospect of war brought Delhi and Islamabad face to face with a nuclear holocaust, and leaders in each
country did what they had to do to avoid it.
Mt. Pinatubo in the Philippines, also in 1991, threw some 17 million tons of
particulates into the upper atmosphere that caused global temperatures to drop by about a
degree for several months. Sunlight dropped by 10%. This temperature drop did not,
however, have any long-term effect on agriculture. Pinatubo was only a blip compared the the K-T
extinction event of some 65 million years ago, when a theorized asteroid hit us with one hundred million megatons
of destructive force, lighting virtually the entire world on fire. The evidence of this is called the K-T boundary, a layer
of clay found all around the world. Sunlight was reduced by 10-20% for ten years, which caused a massive
cascading extinction of species from plants to herbivores to carnivores.
anything like this to happen from a nuclear war . Times continue to change, including the nature of
warfare. Nations no longer stockpile the megaton class weapons popular in the 1950s and
1960s; typical yields now are a fraction of a megaton . The United States' conventional
capability is now so good that it can effectively destroy an entire nation's
ability to wage large-scale war overnight, using only conventional weapons. But that doesn't mean
the nuclear forces are no longer needed. Should a superpower strike first against the United States with nuclear
weapons, the response would more than likely be nuclear, bringing Mutually Assured Destruction into play. But what
about a small nation striking first? What about nukes in the trunks of cars parked in major cities? In the modern era,
it's much less clear that any superpower would necessarily have anyone to shoot back at. And so, while the nuclear
winter scenario is a good prediction of the effects of a worst-case scenario, when all the variables are at their least
favorable, the strongest probabilities favor a much less catastrophic nuclear autumn ;
and even those effects depend strongly on variables like whether the war happens during the growing season. A
bomb in Los Angeles might result in history's worst firestorm, while a bomb in the mountains of Pakistan might
create no fires at all. The simple fact is that
what kind of climate effects the smoke following nuclear fires will produce, until it actually happens. Obviously
we're all very mindful of the many terrible implications of nuclear combat, and if it ever happens, the prospect of a
nuclear autumn will likely be among the least of our concerns. The physicist Freeman Dyson perhaps described it
best when he said "(TTAPS is) an absolutely atrocious piece of science, but I quite despair of setting the public
record straight... Who wants to be accused of being in favor of nuclear war?"
a giant dust storm was cooling the atmosphere of Mars had inspired two more scientists, James Pollack and Brian
Toon, into new calculations of dust effects. This led them into work with Carl Sagan on how the aerosols emitted by
all-out nuclear war was literally suicidal would persuade nations to reduce their arsenals? As a side effect, the
computer
models were so simplified, and the data on smoke and other aerosols were still so poo r,
that the scientists could say nothing for certain . Critics, mostly people opposed to nuclear
disarmament, quickly pointed out the deficiencies. In the mid 1980s, detailed studies confirmed that a
nuclear war would probably alter global climate temporarily. But as Schneider and a
coauthor explained in a widely read article, it was not likely to bring an apocalyptic winter, but it
studies helped to improve scientific understanding of how aerosols could affect climate.(9) The
would bring a damaging "nuclear fall." (According to more recent research, smoke following even a limited, regional
war would probably dim sunlight enough to kill many more people through starvation than would die directly under
the bombs.)(10)
Nuclear pessimistsand there are manyinsist that even if this pattern has held in the past, it's crazy to
rely on it in the future, for several reasons. The first is that today's nuclear wannabes are so
completely unhinged, you'd be mad to trust them with a bomb . Take the sybaritic Kim
Jong Il, who's never missed a chance to demonstrate his battiness, or Mahmoud Ahmadinejad, who has
denied the Holocaust and promised the destruction of Israel, and who, according to some respected Middle East
scholars, runs a messianic martyrdom cult that would welcome nuclear obliteration. These regimes are the ultimate
the thinking goesand there's no deterring rogues. But are Kim and
Ahmadinejad really scarier and crazier than were Stalin and Mao? It might look that way
rogues,
from Seoul or Tel Aviv, but history says otherwise. Khrushchev, remember, threatened to "bury" the United States,
and in 1957, Mao blithely declared that a nuclear war with America wouldn't be so bad because even "if half of
mankind died the whole world would become socialist." Pyongyang and Tehran support terrorismbut so did
Moscow and Beijing. And as for seeming suicidal, Michael Desch of the University of Notre Dame points out that
Stalin and Mao are the real record holders here: both were responsible for the deaths of some 20 million of their
Yet when push came to shove, their regimes balked at nuclear suicide,
and so would today's international bogeymen . For all of Ahmadinejad's antics, his power is limited,
and the clerical regime has always proved rational and pragmatic when its life is on the line. Revolutionary Iran
has never started a war, has done deals with both Washington and Jerusalem, and sued for peace in its war
with Iraq (which Saddam started) once it realized it couldn't win. North Korea, meanwhile, is a tiny,
impoverished, family-run country with a history of being invaded; it s overwhelming preoccupation is
survival, and every time it becomes more belligerent it reverses itself a few months later (witness last week,
own citizens.
when Pyongyang told Seoul and Washington it was ready to return to the bargaining table). These countries may be
brutally oppressive, but
ensuing nuclear responsibility of a handful of states that has so far kept mankind
away from the total wipeout. The theory of reciprocal deterrence wasnt there all
the time. A long two decades after the A-bomb was invented, the powers who had it in their arsenals thought of
it as fair game, a weapon you could actually use in a conflict, rather than a deterrent. The Cuban Missile
Crisis came as a wakeup call. It brought home the danger of nuclear weapons and led to the nonproliferation regime as conceived by the so-called "nuclear club," which included the Soviet Union, the US,
Britain, France and China. Under the NPT, only countries that made and set off a nuclear bomb prior to January 1,
1967 were granted the status of a nuclear power. Washington, London and Moscow were the first to sign the treaty
in 1968, with Paris and Beijing committing themselves to it years later. But all of the signatories abided by the
rules. Those times have passed. NPT controls have become so loose and new nuclear powers so
numerous, theres no counting them anymore. India, Pakistan, Israel and North Korea have never even applied for
"nuclear club" membership. On the contrary, they created their own shadow club with no rules. The official club
with all its nukes poses less threat to the human race than this bunch of neophytes. Volatility has spread,
though South Asia plays a separate role in it. "Some South Asian countries have a full arsenal of nukes," says Pyotr
Topychkanov, a senior researcher at the International Security Center of the Institute of World Economy and
International Relations at the Russian Academy of Sciences. "They have enough nuclear warheads and vehicles.
They have only one equal in the Middle East, which is Israel. Iran has no nuclear weapons yet." "The same is true
North Korea, which has weapon-grade fissile nuclear materials. They have built and tested explosive
countries that really cause
concern are India, Pakistan and China. China and Pakistan are longtime partners, including their
of
devices, but its still a long way to fully-fledged nukes for them." "The
nuclear agenda. India borders on China and Pakistan and is certainly aware of this partnership. It doesnt have faith
in either. Were a conflict to spark off, it would be trilateral and include not only India and Pakistan, but India,
Pakistan and China." About 30 to 40 countries are on their way towards nuclear status. Many of them are inches
away, like Germany, Japan and Canada, who could have had an A-bomb long ago but simply didnt wish to. The
Sunni Saudi Arabia has hinted it will make a bomb the moment the Shiite Iran lays its hands on one. The principle
of uncontrolled nuclear proliferation was formulated back in 1965, when Pakistans foreign chief Zulfikar Ali Bhutto
said: "Theres a Christian bomb, a Jewish bomb and now even a Hindu bomb. Its high time we got a Muslim bomb."
Nuclear terrorism is yet another problem. Terrorists cant make a nuke. But they do know how
to pit countries and eventually provoke them to an inadequate response . Theres no
lacking of short-sighted politicians who can take that last step, for instance Republican Senator Steve Buyer who
nudged the government after 9/11 to nuke Tora Bora caves, instead of sending a task force to Afghanistan. In that
the threat of a full-scale nuclear war has transformed into the menace of a
local nuclear conflict, or even a string of them. You shouldnt be lulled by their seeming locality though,
since a precise nuclear strike will be felt globally, says PIR Center Internet Project Director Andrei Baklitsky. "A
nuclear conflict will have dramatic consequences for all of us, because nuclear
weapons are weapons of mass destruction . They are not selective. A nuclear attack in the Middle
sense,
East would be most tragic, first of all, because of its huge oil fields, and a burning oil field is a big trouble. Secondly,
any strike on the Middle East will skyrocket oil prices across the world and plunge the global economy back into an
even worse economic crisis that before. The consequences of using an A-bomb in an Indo-Pakistani conflict would
be just as grave for these densely populated countries, driving millions of refugees out of their homes and turning
agriculture lands into barren wastes." Unfortunately, the world is home to many paradoxes.
Despite a drop in
amounts of nuclear weapons worldwide, the collapse of the bipolar world has made
the risk of a manmade apocalypse palpable.
the public mind has pretty much forgotten about the existence of
nuclear weapons, except in the Middle East. And yet, they still exist thousands and
Since the end of the Cold War,
thousands of them, ready to destroy all of human civilization several times over. In response, a new nuclear
disarmament movement is getting underway. This week, I attended the Vienna conference on the Humanitarian
Impact of Nuclear Weapons. (Full disclosure: one of the sponsoring organizations, the Nuclear Threat Initiative,
which says that the world's major power-brokers should have nuclear weapons as a way of preventing a new world
war. Advocates of this doctrine point to the Cold War, which never went hot, as a success for deterrence. But
supporters of disarmament including the Red Cross, Pope Francis, and, believe it or not, Henry Kissinger say
that's wrong. These are serious, sober-minded people, not just pie-in-the-sky activists, and they say that
deterrence doesn't work in a multipolar world . Instead, the presence of nuclear weapons
just creates an incentive for more proliferation, as small countries try to one-up their
regional adversaries. What's more and this was the most striking thing at the conference they point to
the risks inherent in the existence of nuclear weapons. History has recorded many close calls in which
nuclear weapons were almost fired. (This, in turn, could have led to a nightmare scenario where an accidental strike
collapsed. This is exactly the kind of risk we are talking about with nuclear weapons.
primarily concerned with discovering human nature, its role in social and political
life as well as ways and means of giving meaning to human life. Peace has been
central to this process of inquiry and thought which has led humanity to its present
condition. Theories of peace and war have been central to this cognitive exercise.
However, in the last three centuries, relations between nation-states have taken
the central stage. Theories have come to light which illuminate our understanding
of how nations interact, what causes them to go to war, what motivations might
they have to establish peace and how these causes and motivations might be
managed to reach a stage where peace is not an armistice in a war as Thucydides
(431BCE) stated but a virtue, a state of mind, a disposition for benevolence,
confidence, justice as Baruch Spinoza (1670) considered it to be. Nonetheless,
there are still considerable obstacles that remain in the pursuit of peace.
Theorists have outlined them and literature has shed light on these hurdles whereas
in some cases the pre-occupation with peace has also led towards a more hostile
state of international affairs amongst nations as well as peoples.
pundits are
keen to draw parallels between 1914 and 2014though on its face its not
apparent to me why 2014 should be more like 1914 than 2013. Academic strategists familiar
with their disciplinary history will know that the issue of whether major wars obsolete received a
detailed coverage back in Survival magazine in the late 1990s. To save readers the trouble of digging through their
archives, one contributor, John Mueller, argued that it was obsoletegone the way of slavery and duelingwhile
WWII roll around, but especially this year because its the 100th anniversary of the outbreak of WWI. Some
others wrestled partly over how to define obsolescence and even more over how to define major war. Was the Vietnam War major?
warsin particular, nasty little wars in faraway placesare obsolete, perhaps because
they
patently arent. From memory, Mueller didnt want to call those conflicts wars, though; he saw those more as
opportunistic predation (Thats the reason the cover of his book, The Remnants of War, features an imagefrom the Balkan
a few decades back suggests that great-power wars against each other arent common. Jack Levy in his research on war in the
international system between 1495 and 1975 found only nine of what he would call world warswars where almost all great
powers were involved. Much more commonly, he found interstate wars113 of which engaged a great power. I cite those figures
to underline two points. First, if world wars are rare, maybe we dont need special explanations to say why there hasnt been one
or producing rivalry among states due to their relative social positions (Hafner-Burton and Montgomery, 2006). We
are nevertheless among the first to directly tackle the principal claims supporting the liberal thesis that trade
institutions dampen conflict, and to propose an explanation for why conflict often characterizes outcomes. This is
Commonwealth of Independent States (CIS); the outbreak of war in the Great Lakes, with foreign involvement in
the Democratic Republic of Congo from Angola, Namibia, Rwanda, Uganda, and Zimbabwe, all members of the
Common Market for Eastern and Southern Africa (COMESA); the Iraqi invasion of Kuwait and violent border
clashes between Egypt and Sudan, all members of the Council of Arab Economic Unity (CAEU); and fighting
between India and Pakistan, members of the South Asian Association for Regional Cooperation (SAARC). North and
South Korea frequently are involved in violent incidents; both are members of the Global System of Trade
Preferences Among Developing Countries (GSTP). A majority of these disputants are also members of the WTO.
Powers contends that in Africa, 16% of all militarized international disputes registered by the Correlates of War
the common interest between PTA members requires a minimum level of homogeneity: a pluralist social structure,
a high level of economic and industrial development, and ideological similarity (Haas, 1960). Security communities
are also most likely to develop through economic relations among Western nations, as even the most
institutionalized forms of integration in the developing world cannot be said to create the mutual identification at
the core of the concept (Bearce, 2003). Although evidence suggests that economic integration has led to the
formation of a collective identity and trust among member states of the European Union over time, it is well
understood that democratic features of liberal democracies enable the community in the first place (Russett and
gains. Boehmer, Gartzke, and Nordstrom cogently argue that states that belong to many different international
institutions may have a greater number of international interests to competitively defend and a greater array of
opportunities to enact aggressive behavior in defense of those perceived interests (Boehmer et al., 2002). We
within international relations, which shape expectations for behavior by defining which issues are legitimate for
contestation via military means and enable states to coerce, bribe, reward, or punish each other. We address this
possibility in the next section.
Leaders value short-term benefits of aggression over longterm economic harms economic MAD fails
Solomon 15 (Jon Solomon is a writer at Information Dissemination, a naval information blog. He is citing
Eric Lorber and Jacquelyn Schneider. Eric Lorber is a PhD candidate in Political Science at Duke and a JD candidate
at the University of Pennsylvania Law School. His research focuses on civil-military relations, the use of force
against non-state actors, and the credibility of security guarantees. He has been a fellow at the Duke University
American Grand Strategy Program, worked for the RAND Corporation, and is currently an adjunct staff member at
the Institute for Defense Analyses. Jacquelyn Schneider is a PhD student in Political Science at George Washington
University. Her research focuses on the intersection of national security, technology, and political psychology and
covers a diverse range of topics from intelligence to unmanned technologies to cyber policy. She has won awards
for Best Graduate Student Paper at both the International Studies Association Annual Meeting (Foreign Policy
Section and International Security Studies Section) and the Southwestern Social Sciences Association Annual
Meeting and is a two-time award winner of the AFCEA National Intelligence Writing Contest. She holds a B.A. in
Economics and Political Science from Columbia University and a M.A. in Political Science from Arizona State
University. The Fallacy of Mutually Assured Economic Destruction 4/24/15
http://www.informationdissemination.net/2015/04/the-fallacy-of-mutually-assured.html)///CW
economic
sanctions cannot serve as standalone deterrents against aggression by another state. They noted
In an excellent War on the Rocks article last week, Eric Lorber and Jacquelyn Schneider argued that
in particular how prospect theory and credibility considerations affect the utility of threatened economic
punishments as a deterrent within an opponents decision-making: while these new, sophisticated sanctions
economy, when supported by capital reserves, is sufficiently resilient to put off the worst impacts of the sanctions
for a few years. In the short-term, however, Russia has been able to annex Crimea and exercise significant influence
European Union member states about how to respond to additional Russian aggression, Russia may not believe that
the United States and the European Union will impose additional, extremely painful sanctions on the country, and
therefore may not be deterred from engaging in additional destabilizing action in Ukraine. They conclude that a
defender must understand the aggressive actors intentions and motivations in order to determine whether
deterrence by economic punishment is likely to succeed: Policymakers in Washington need to do better than
conclude that these sanctions will cause economic pain, therefore they will deter. Rather, they must analyze
whether the particular sanctions on the table will influence a malicious actors decision-making. In other words,
the opponents leaders political objectives and perceptions of the strategic circumstances (including pressures
stemming from domestic popular passions) are central variables in determining a deterrence policys probable
efficacy. While all deterrence policies face this challenge to some degree, it tends to especially impact deterrence
economic catastrophe is not sufficient if opponents leaders value some other political objective more highly or
suffer from exceptional strategic desperation. Japanese leaders proved that exact point in their decision for war
of sovereign states.
We cannot know for sure what caused the absence of great-power wars over the last
seventy years.17 We are left with dueling counterfactuals and the need to bet and trust.18 The opponents of
the goal of a world without nuclear weapons create a false dichotomy between what we know for a fact and what
we hypothesize. On the one hand, they argue, is the hard fact of the nuclear peace; on the other hand are other
of war between the United States and the Soviet Union during the same period. The fact is that the idea of the
nuclear peace and competing explanations share the same status : all are hypotheses, requiring a
rerun of the history of the last seventy years without nuclear weapons to see whether war would have broken out.
The nuclear peace hypothesis is no less a counterfactual than its rivals.19 It faces the challenge of proving a
deploy nuclear weapons in the Crimea , NATO reviewing the role of nuclear weapons in the alliance,
and a recent report in the US arguing for a more versatile arsenal of tactical nuclear
weapons, its clear the worlds revisiting an old problem: how to build effective nuclear deterrence
arrangements. Since the end of the Cold War, thinking about deterrence issues has been mainly confined to the
academic and think-tank world. But policymakers are now having to re-engage with those issues. And the problem
diverse, more opaque, and sometimes more reckless . Done properly, deterrence is a contest
in threats and nerve, orto use Thomas Schellings phraseologythe manipulation of risk. (The chapter so titled
in Schellings Arms and influence is a great starting point for anyone wanting to think through the broader
deterrence problem.) That helps explain why some thought the concept ugly. Its hard to make a policy
threatening massive damage to societies and civilians sound noble and aspirational. Still, the bad news is that the
alternatives are worse. And if deterrence is going to remain the dominant approach in nuclear weapon strategy, we
need to fit the strategy to the contemporary geopolitical environment. Historical experience of the deterrence
problem is greatest in relation to two competing superpowers, separated by intercontinental distances, endowed
Weve had
relatively little experience of nuclear deterrence in contests between giants and
midgets (US v North Korea), between established and fast-rising powers (US v China), and
with the resources to manage challenges, and both knowing well the costs of major war.
amongst players in a multipolar system. Even our understanding of the role nuclear deterrence plays in relations
the old
superpower deterrence model might not fit those new challenges well. Indeed, maybe the
between regional rivals (think South Asia) remains under-developed. Its entirely possible that
old model doesnt even fit the USRussian strategic relationship well these days: Russias no longer governed by a
sclerotic CPSU. Some years back INSS Elaine Bunn (now a senior official in the Obama administration) wrote a
paper unpacking the notion of tailored deterrence introduced in the 2006 Quadrennial Defense Review. True,
deterrence has always been characterized by particular strategic wrinkles, but Bunns paper was an attempt to
bring those wrinkles to the fore in relation to the possibility of a nuclear-armed North Korea, Iran, or transnational
terrorist group. Her exploration of three different forms of tailoringtailoring to specific actors and specific
situations; tailoring capabilities; and tailoring communicationshelps to illustrate the growing complexity of the
deterrence challenge. It now seems likely that were headed back into a set of complicated deterrence debates. A
desperate choices tend not to be good ones. Deterrence in the context of an established power versus a fast-rising
vexed: actors require the capabilities to deter and defend against another, but also the residual capabilities to
remain a player in other contests. The pressure must surely be towards larger rather than smaller arsenals. And
reputational issues become more dominant: just as Margaret Thatcher fought the Falklands War in part to show the
Soviet Union that the West wouldnt buckle in the face of force, so too players in a multipolar nuclear world will
want to show resolve in one contest because of its implications for others. Finally, and perhaps most
controversially,
push comes to shove. During the 1960s the US advocated a doctrine of flexible response , arguing
for a model of deterrence that would fail in small packets rather than in one catastrophic breakdown.
Notwithstanding the giantmidget problem outlined above, theres usually good sense behind such a doctrine: it
makes deterrent threats more credible, avoids global annihilation in any initial crossing of the nuclear threshold,
maintains a degree of intra-war deterrence from the options still on the table, and optimizes prospects for
resolved by the end of the Cold War. Tailoring, messaging, usability, credibility, and thresholds: I suspect
policymakers will soon be thinking about all those questions again, across a range of deterrence relationships.
Carnegie Mellon University from 1989 to 1999 and is now a professor emeritus. Selected for the US Foreign Service
through competitive examinations in 1952, Goodby rose to the rank of career minister in the Senior Foreign Service
and was given five presidential appointments to ambassadorial rank, including ambassador to Finland (198081).
During his Foreign Service career he was involved as a negotiator or as a policy adviser in the creation of the
International Atomic Energy Agency, the negotiation of the limited nuclear test ban treaty, START, the Conference
on Disarmament in Europe, and cooperative threat reduction (the Nunn-Lugar program). Goodbys awards include
the Presidential Distinguished Service Award, the State Departments Superior and Distinguished Honor Awards, and
the Commanders Cross of the Order of Merit of Germany. He was named a Distinguished Fellow of the US Institute
of Peace in 1992. He was the recipient of the inaugural Heinz Award in Public Policy in 1995. In 1996, he was
awarded an honorary doctor of laws degree by the Stetson University College of Law. The New Dilemmas of
Nuclear Deterrence 7/3/15 http://thediplomat.com/2015/07/the-new-dilemmas-of-nuclear-deterrence/)///CW
During the Cold War, nuclear deterrence was essentially a US-Soviet calculation. After the Cold War, China began
to loom larger in US planning, but the premise that deterrence was essentially a bilateral interaction remained. In
the future, situations that are not demonstrably bilateral may become the norm. Even
now, but especially in the event global nonproliferation efforts fail to meet current challenges, the nuclear
deterrence calculations of the United States and other states armed with nuclear weapons will have to
be based on a much more complex set of global and regional dynamics. In such a system, if
nuclear weapons were used or even if their use were threatened, there would be an
action-and-reaction effect that might involve several nations, not just two as in the Cold War
paradigm. For example, the alert status of nuclear delivery systems probably would be changed to a higher level
making. Catalytic nuclear war was one of the worries of the Kennedy and Johnson administrations. It meant that
the United States could become engaged in a nuclear war because a nuclear-armed US ally had used a nuclear
weapon and their common adversary, the Soviet Union, had decided to use nuclear weapons in response. Those
worries would also figure in a complex world of perhaps fifteen or so nuclear-armed states, which would also
include the unknown capabilities of terrorist groups and the likelihood that cyber-mischief would accompany any
nuclear attack. How does one measure strategic stability in such a situation?
Luck is too often taken as a confirmation that nuclear deterrence kept the peace.28 But luck should
not be misread as successful deter- rence.29 More accurately, as Thomas Schelling noted, leaders of
retrospective illusion.31 Luck was on our side this time, but this is not a consequence of purposeful action.
For example, during the night of October 2627, 1962, at the height of the Cuban missile crisis , an
American U-2 spy plane strayed into Soviet airspace over the Arctic. Soviet fighter jets
scrambled to intercept the U-2 while F-102 interceptors were sent to escort it home and prevent Soviet MIGs from
nuclear Falcon air-to-air missiles and, under existing safety rules, were authorized to carry the weapons in full
readiness condition in any active air defense mission.32 Fortunately, the spy plane turned back
and the Soviet jets held their fire.33 There are many other instances in which deterrence cannot account for
favorable outcomes.34 Robert McNamara was direct about the role of luck during the Cuban missile crisis:
According to former Soviet military leaders, at the height of the crisis, Soviet forces in Cuba possessed 162 nuclear
warheads, including at least 90 tactical warheads. [And the United States. was not aware of that at the time.] At
about the same time, Cuban President Fidel Castro asked the Soviet ambassador to Cuba to send a cable to Soviet
Premier Nikita Khrushchev stating that Castro urged him to counter a U.S. attack with a nuclear response. Clearly,
there was a high risk that in the face of a U.S. attack, which many in the U.S. government were prepared to
recommend to President Kennedy, the Soviet forces in Cuba would have decided to use their nuclear weapons
more frightening because, as the lead commander recounted to me, the subs were out of communication with
their Soviet bases, and they continued their patrols for four days after Khrushchev announced the withdrawal of
the missiles from Cuba. The lesson, if it had not been clear before, was made so at a conference on the crisis held
in Havana in 1992. . . . Near the end of that meeting, I asked Castro whether he would have recommended that
Khrushchev use the weapons in the face of a U.S. invasion, and if so, how he thought the United States would
respond. We started from the assumption that if there was an invasion of Cuba, nuclear war would erupt, Castro
replied. We were certain of that. . . . [W]e would be forced to pay the price that we would disappear. He
continued, Would I have been ready to use nuclear weapons? Yes, I would have agreed to the use of nuclear
weapons. And he added, If Mr. McNamara or Mr. Kennedy had been in our place, and had their country been
invaded, or their country was going to be occupied . . . I believe they would have used tactical nuclear weapons.
I hope that President Kennedy and I would not have behaved as Castro suggested we would have. . . . Had we
responded in a similar way the damage to the United States would have been unthinkable. But
human
beings are fallible [emphasis added].35 This fascinating account shows how lack of information,
misperception, and ideology could have led to disaster if we had not been lucky. But false information, lack of
information, and misperceptions were not the only reason why luck was the decisive cause of the positive outcome
of the Cuban missile crisis. Limits of safety, limits of command and control, and organizational problems also have
government, occurred during the crisis. None of these incidents led to inadvertent escalation or an accidental war.
All of them, however, had the potential to do so. President Kennedy may well have been prudent. He did not,
sloppy
practices in nuclear weapons management have occurred at all levels of decisionmakers, leaders, nuclear safety and security teams, and top-level military personnel in most nuclear-weapon
however, have unchallenged final control over U.S. nuclear weapons.36 Most-recent studies show that
states. They also show the limits of learning from past sloppy practices. Confidence in perfect nuclear safety is still
a matter of wishing for the best and relying on luck.37 One telling example of this occurred at Minot Air Force
Base in North Dakota in 2007. This offers a well-documented case of multiple sloppy practices and suggests the
during a thirty-six-hour period. Had the plane experienced any problems in flight, the crew would not have followed
the proper emergency procedures.38 After this widely publicized case of sloppy practices,39 US Secretary of
Defense Robert Gates emphasized the need for responsibility in handling nuclear weapons: The problems were
the result of a long-standing slide in the Services nuclear stewardship. . . . For your part, you must never take
your duties lightly. There is simply no room for error. Yours is the most sensitive mission in the entire US
military.40 Change and improvement were supposed to follow, but even on the base where the incident took
place and where the Secretary of Defense came to give his speech, it was necessary to repeat the order to leave
no room for error. In April 2013, one officer from the 91st Missile Wing at the same Air Force Base in North Dakota
was punished for sleeping on the job while having the blast door open behind him. (Sleeping wasnt prohibited on
a twenty-four-hour shift, but leaving the blast door open was.) He was one of two missile officers sanctioned that
year for such a fault and he told his superiors that it wasnt the first time.41 Air Force officers told the Associated
Press that such violations of the safety procedures had happened more often than just in the two documented
cases.42 The limits of safety, the limits of command and control, and the persistence of sloppy practices even in
procedures were not followed. The quotes for the account of this particular accident are taken from the
unclassified account available in the February 2008 report from the Defense Science Board Permanent Task Force
on Nuclear Weapons Surety, entitled Report on the Unauthorized Movement of Nuclear Weapons. There are no
reliable records of nuclear weapons accidents or close calls in most nuclear-weapon states.
A2 Tepperman
Teppermans thesis ignores complexities and accidents
expert consensus
Shaw 9 (Douglas B. Shaw serves as the Associate Dean for Planning, Research, and External Relations at the
George Washington Universitys Elliott School of International Affairs with a concurrent appointment as an Assistant
Professor of International Affairs. Doug previously served as Director of Policy Planning in the Office of the President
at Georgetown University, on the U.S. Department of Energys Nuclear Material Security Task Force, at the U.S.
Arms Control and Disarmament Agency, and in leadership roles for a number of non-governmental organizations
including Physicians for Social Responsibility, the Lawyers Alliance for World Security, and the Institute on Religion
and Public Policy. Doug holds a Ph.D. in international relations from Georgetown University and has lectured on
nuclear nonproliferation and disarmament on four continents. Newsweek misrepresents nuclear weapons
scholarship 9/1/9 http://nukesonablog.blogspot.com/2009/09/newsweek-misrepresents-nuclearweapons.html)///CW
Jonathan Teppermans thesis in his September 7th Newsweek article Why Obama should Learn to Love the
Bomb that a growing and compelling body of research suggests that nuclear weapons may not, in fact, make the
Kissinger, and Sam Nunn opposed this view in two op-eds in the Wall Street Journal and other leading scholars and
practitioners participated in a 2007 conference at Stanford University, now memorialized as a 500-page volume,
Tepperman
suggests a robust understanding of how deterrence relates to todays challenges
where none exists. Nuclear deterrence scholar Sir Lawrence Freedman observed a lost
generation of nuclear weapons specialists in remarks at the Elliott School of International Affairs
Reykjavik Revisited. Scores of experts are summarily excluded from Teppermans article. Second,
this spring and Commander of the U.S. Strategic Command, General Kevin Chilton, observed this summer we have
More
scholarship is needed to translate nuclear optimism and other Cold War concepts
into the Twenty-first Century. Third, in over 2,700 words on deterrence, not one of
them is accident. This is a catastrophic flaw in characterizing scholarly debate on
nuclear weapons. Kenneth Waltz, cited by Tepperman as the leading nuclear optimist underlines this point
allowed an entire generation to skip class, as it were, on the subject of strategic deterrence.
by co-authoring a book titled The Spread of Nuclear Weapons: A Debate Renewed with Stanford Universitys Scott
Sagan who has done decades of careful scholarship to demonstrate the relevance of accidents to nuclear
A2 Empirics
Their empirics argument is historically false
Pelopidas 15 (Benot Pelopidas is a lecturer (assistant professor with tenure) in international relations at
the University of Bristol (Global Insecurities Center) and an affiliate of the Center for International Security and
Cooperation at Stanford University. He has been awarded two international prizes for his research, from the
International Studies Association and the James Martin Center for Nonproliferation Studies. His research focuses on
the global politics of nuclear vulnerability, cases of near-use of nuclear weapons, and lessons learned from global
nuclear history and French nuclear policies. His is currently completing an edited volume on the experience of the
Cuban missile crisis worldwide as an early set of experiences of global nuclear vulnerability and its implications for
security, responsibility, and alliance dynamics. Challenging the Assumptions of Classical Nuclear Deterrence
Theory: The War That Must Never Be Fought 3/12/15, can be downloaded at
http://www.hoover.org/research/challenging-assumptions-classical-nuclear-deterrence-theory)///CW
The limits of nuclear deterrence as a peacemaker23 Critics of abolition portray a world without nuclear weapons as
warprone and believe that nuclear weapons are a necessary and sufficient cause for great-power peace.
This is
only the latest instance of an idea that has repeatedly been proven wrong, since at
least 1860: the expectation that the unprecedented destructiveness of a new weapon
system and the threat of its use will put an end to war. This was wrong for dynamite,
submarines, artillery, smokeless powder, the machine gun, and poison gas.24 Was
nuclear deterrence a necessary and sufficient cause for peace among great powers? Most critics of the idea of a
the claims for nuclear weapons as peacemakers. More importantly, even this narrower claim needs to be
reexamined taking into account two facts: (1) avoidance of several nuclear disasters was due to luck and cannot
be explained by nuclear deterrence; and (2) deterrence as a strategy has favored more risk-prone strategies and
in some cases made war possible instead of preventing it.
examined the issue, though inevitably such estimates rely heavily on subjective judgment.1 The most reasonable estimate might be substantially higher
the strongest reason for judging the total existential risk within the next
few centuries to be significant is the extreme magnitude of the values at stake.
Even a small probability of existential catastrophe could be highly practically
significant (Bostrom 2003; Matheny 2007; Posner 2004; Weitzman 2009). Humanity has survived what we might call
natural existential risks for hundreds of thousands of years; thus it is prima facie unlikely that any of
or lower. But perhaps
them will do us in within the next hundred.2 This conclusion is buttressed when we analyze specific risks from nature, such as asteroid impacts,
supervolcanic eruptions, earthquakes, gamma-ray bursts, and so forth: Empirical impact distributions and scientific models suggest that the likelihood of
of existential risk
most of the biggest existential risks seem to be linked to potential future technological breakthroughs that may radically expand our ability to manipulate
conditional probability of X given that A is crucially flawed , P(X|A), may be fairly high. We
may then find that most of the risk of X resides in the uncertainty of our scientific
assessment that P(X) was small (figure 1) (Ord, Hillerbrand and Sandberg 2010).
Consequentialism Good
Public Health surveillance requires consequentialist framingpublic health outweighs minor violations of rights most of the
time
Petrini 13 (Carlo Petrini. Unit di Bioetica, Presidenza, Istituto Superiore di
Sanit.Ethics in Public Health Surveillance. 2013. P. 352.
http://www.scielosp.org/pdf/aiss/v49n4/v49n4a05.pdf)EMerz
The ethical problems posed by public health surveillance have been specifically
addressed in numerous studies in the past, and various factors have led to an
increase in this interest in recent years, including the diffusion of new and
unforeseen epidemics and a greater awareness of and sensitivity towards the issues
involved [57]. The checklists shown above can help to assess the compatibility of
public health surveillance programmes with ethical principles. One of the major
problems highlighted by these tools is the fact that, given the virtual impossibility of
obtaining informed consent, programmes for public health surveillance frequently
necessitate an infringement of the principle of autonomy. Today it is widely
accepted that Overriding individual autonomy must be justified in terms of the
obligation of public health to improve population health, reduce inequities, attend to
the health of vulnerable and systematically disadvantaged persons, and prevent
harm. In addition, data elements collected without consent must represent the
minimal necessary interference, lead to effective public health action, and be
maintained securely [15]. Returning to Childress and co-authors, they suggest five
useful conditions intended to help determine whether promoting public health
warrants overriding such values as individual liberty or justice in particular
cases. These conditions encapsulate the key criteria referred to in the various
checklists. They are: effectiveness; proportionality; necessity; least infringement;
public justification [55]. In summarising the criteria listed above it may also be
helpful to refer to a proposal formulated by the noted biolaw expert Lawrence
Gostin on the spread of Severe Acute Respiratory Syndrome (SARS). His concise
proposal makes a suitable and practical conclusion: Coercive measures, which
violate individual rights, are acceptable when: - the risk to public health is
demonstrable; - the intervention is likely to be effective, cost-effective, not overly
invasive, fairly distributed; - the process for pursuing intervention is just and
publicly transparent [58].
Utilitarianism Good
Adopt a framework of public health utilitarianism this avoids
the traditional trap of sacrificing the few for the many but
maintains the best possible consequences
Gostin 10 (Lawrence O. Gostin has more qualifications than any other card put out in the past 30
years. He is University Professor, Georgetown University's highest academic rank conferred by the
University President. Prof. Gostin directs the O'Neill Institute for National and Global Health Law and
was the Founding O'Neill Chair in Global Health Law. He served as Associate Dean for Research at
Georgetown Law from 2004 to 2008. He is Professor of Medicine at Georgetown University, Professor
of Public Health at the Johns Hopkins University, and Director of the Center for Law & the Public's
Health at Johns Hopkins and Georgetown Universities. Prof. Gostin is the Director of the World Health
Organization Collaborating Center on Public Health Law & Human Rights. He also serves on the WHO
Director-General's Advisory Committee on Reforming the World Health Organization. In 2007, the WHO
Director-General appointed Prof. Gostin to the International Health Regulations (IHR) Roster of Experts
and the Expert Advisory Panel on Mental Health. In a 2012 systematic empirical analysis of legal
scholarship, independent researchers ranked Prof. Gostin 1st in the nation in productivity among all
law professors, and 11th in in impact and influence. Public Health Law, Ethics, and Human Rights:
Mapping the Issues http://www.publichealthlaw.net/Reader/ch1/ch1.htm)///CW
The application of general ethical principles to public health decisions can be difficult and complicated. Since the
public health is to achieve the greatest health benefits for the greatest number of people, it draws
from the traditions of utilitarianism or consequentialism. The public health model, argue Buchanan
mission of
(2000) and his colleagues, uncritically assumes that the appropriate mode of evaluating options is some form of
cost-benefit (or cost-effectiveness) calculation the aggregation of goods and bads (costs and benefits) across
Public health, according to this view, appears to permit, or even require, that
the most fundamental interests of individuals be sacrificed in order to produce the
best overall outcome. This characterization misperceives, or at least oversimplifies, the
public health approach. The field of public health is interested in securing the
greatest benefits for the most people. But public health does not simply aggregate benefits and
burdens, choosing the policy that produces the most good and the least harm. Rather, the overwhelming
majority of public health interventions are intended to benefit the whole population,
without knowingly harming individuals or groups. When public health authorities work in the
individuals.
areas of tobacco control, the environment, or occupational safety, for example, their belief is that everyone will
objective is to prevent unreasonable risks that jeopardize the publics health and safety e.g, polluting a stream,
practicing medicine without a license, or exposing others to an infectious disease. More controversially,
public
health authorities often recommend paternalistic interventions such as mandatory seat belt
or motorcycle helmet laws. Public health authorities reason that the sacrifice asked of
individuals is relatively minimal and the communal benefits substantial . Few public
health experts advocate denial of fundamental interests in the name of paternalism. In the public health model,
individual interests in autonomy, privacy, liberty, and property are taken seriously,
but they do not invariably trump community health benefits . The public health approach,
therefore, differs from modern liberalism primarily in its preferences for balancing public health favors community
Utilitarianism Bad
Health care should use a deontological approach the ends
dont justify the means
MM 07 (Mornings Minion is a Catholic blog, Utilitarianism in Health Care 8/23/07 http://voxnova.com/2007/08/23/utilitarianism-in-health-care/)///CW
On all three grounds, she argues that social justice considerations do not support a transfer from the young and
healthy to the old and sick on social justice grounds. As I read this, I felt there was something very wrong with her
reasoning. Personally, I am in favor of single payers systems, and on the record as saying so. But Im the first to
admit that there are valid Catholic arguments against single payer systems. There is nothing intrinsically evil about
choosing to fund health care in a different manner. But still, at least from a Catholic perspective, there is
something fundamentally flawed in McArdless reasoning. Here is the problem: it treats social justice not from the
the Enlightenment, and a flawed concept of rationality based on what can be demonstrated empirically. As Pope
owes as much to Thomas Hobbes as it does to classic utilitarians like Bentham. It was Hobbes who, more than
anybody else, led to the idea of social contracts overtaking the common good as the object of policy. Hobbes did
not see humanity as an organic community underpinned by the common good; he saw instead a collection of
individuals all seeking mastery over each other, necessitating some form of social contract to keep the peace.
The individual is everything, the community, nothing . It follows naturally that social justice flows
from the aggregation of individual happiness, rather than an organic conception of the common good. But the
common good stems from the dignity, unity and equality of all people, not some
mechanical calculation. It refers to the sum total of social conditions which allow people, either as groups
or as individuals, to reach their fulfilment more fully and more easily. It is the social and community dimension of
the moral good. While it is underpinned by the dignity of the human person, it is not an individualist ethic; rather, it
recognizes that there is no fulfilment if the individual does not recognize that he or she exists with others and
for others. To see the bankruptcy of the contracts approach to justice, consider abortion. Clearly, the unborn are
not agents that can participate in a social contract. Clearly, their welfare must therefore be discounted, and
subjugated to the welfare of others, who are proper contracting agents. It is this notion that underpins the proabortion position today, and it stems from a failure to understand the encompassing and organic nature of the
extremely limited characteristics, such as luck and personal worthiness. Nowhere in sight is the core principle of
Nowhere is the
idea that our interdependence coupled with the right to health care may call for the
young and healthy to look after the needs of the old and infirm , irrespective of
solidarity, a a firm and persevering determination to commit oneself to the common good.
not as means to another individuals ends.38 This assertion has important consequences in public-health policies,
but is not without ambiguities. Indeed two kinds of liberalism can be drawn: libertarians and egalitarians.39
Libertarians believe that only negative rights deserve protection to warrant individual freedom. By contrast,
egalitarian liberals argue that the right to choice is meaningless without adequate resources. Respectively, the two
Critics
of utilitarianism and liberalism point out that these theories neglect the collective
dimension of public-health ethics that is strongly valued in communitarianism.
Communitarianism values highly the social dimension of health-care policies and
involves visions of the appropriate social order and the virtues that will maintain
such an order in a particular community. However, a basic question in communitarianism is: who
decides what is virtuous? Every community could define its own norms or, by contrast, a single
form of good society may serve as a reference for all communities. Ethics-of-care feminism can also be
mentioned. Ethics-of-care proponents argue that real people live in families and real caring
relationships are not impartial, impersonal or equal. Health-care policies must hence consider the
factual dimension of caring, which is mostly carried out by women, and must be more supportive
towards caring roles.39 All the outlined theories in our view may offer a contribution to a continuing
perspectives entail a minimal or, vice versa, a strong state intervention for the sake of individual health.
discussion about how to deal ethically with public-health matters and how to organize society. What is missing in
these theories is a clear definition of the concept and value of the human person: a primary point in personalism.
to mention its most elementary, and possibly obvious, aspects. Personalism should not be confused with
individualism, which considers auto-decisions as the main (or only) constitutive feature of person.
Personalism
is based upon our common shared human nature . It takes as its primary ethical principle that all
human beings deserve respect. A human is the only being capable of self-reflection and comprehension of the
meaning of life.40 The principles of ontologically- based personalism in bioethics may be summed up as
follows:31the defence, intangibility and sacredness of human life; the therapeutic principle whereby any
intervention on life is justified only if it has a therapeutic purpose; the freedom and responsibility principle, where
freedom recognizes respect for life as its objective limitation; the sociality and subsidiarity principle, consisting of
the achievement of common good through individual well-being.Some consider the traditional value of the person
as a cumbersome dimension. Hence some modern thinkers focus on the individual but not on the person. Post
modern philosophers not only dissolve the concept of person but also that of subject.41 Excessive positions like
these are also present in bioethics. Still bioethics, especially when applied to clinical and experimental issues, is
generally attentive to the individual person. The problem arises in defining the person and the moment when
Personalism
strongly emphasizes the need to protect the weakest and the sickest persons in
society. In a personalistic view, the being and dignity of the person are fundamental and inalienable values.
Moral actions can thus be measured in respect of the persons being and dignity .42 This
he/she begins and ends, from the status of the human embryo to the dignity of the dying.
can be stated through a formulation that is similar to the second Kantian imperative: the person should never be
treated as a simple means, as an instrument that can be used for the purpose of achieving any other end: on the
contrary, the person should be treated as an end, or more specifically respecting, and in some cases promoting,
its own ends.43 In Kants philosophy, however, this imperative has a negative connotation.44 Personalism does
not simply exclude negative behaviours but requires positive attitudes. Personalism and its application to public
ethical theories as it can have both points in common and divergences with them. In a personalist view, for
the consequentialist-utilitarian approach can certainly be part of a publichealth policy as long as the lives and well-being of individuals are preserved .47
example,
Respect for individual rights and freedom is also an essential requisite of human coexistence if it comes with regard
to the correct exercising of freedom that is bonded to respect for life. In public health there might be cases where
of action for reasons which exclusively refer to the wellbeing, good, happiness, needs, interests or values of a
person who is subjected to the coercion.48 A moderate form of patronizing is justified both in serious or emergency
circumstances (such as during epidemics where persons need to be isolated to prevent the spread of a disease),
and in routine conditions where the subject may not be in full charge of the situation and hence it becomes
necessary to force certain behaviours (such as the compulsory wearing of seatbelts). Cautionary policies based on
the precaution principle are also significant in terms of public-health ethics. When scientific data are contradictory
or quantitatively scarce, it is possible to appeal the precautionary principle. This principle shows the need for
making temporary decisions that may be modified on the basis of new facts that eventually become known.49
Some authors have singled out the precautionary principle as one fundamental value in public-health ethics,
alongside justice, transparency and the choice of the least restrictive alternative for peoples autonomy.50 Special
importance has been attached to the precautionary principle by European ethics.51 Its relevance is also underlined
by the Italian Committee on Bioethics and the Pontifical Council for Justice and Peace, with reference to the ethics of
social and collective problems and to environmental issues.52,53 Personalism strongly values principles of sociality
and solidarity. However, the individuals good is the basis for common good. The social dimension of personalism,
which was highly emphasized at the beginning of the 1920s, contributed to the renewal of classical personalism and
the foundation of the modern personalism of Emmanuel Mounier and Jacques Maritain.54,55
Emanuel, the architect of President Obamas signature health care legislation, has penned a
provocative piece published in The Atlantic and entitled Why I Hope to Die at 75. In this essay he argues
that people over the age of 75 are a drain on society and it would serve the common good if they
Ezekiel
would just die sooner rather than later. He is very clear that he is not advocating for euthanasia or assisted suicide.
including health care. Nurse_in_geriatryEmanuel argues that age associated declines in mental-processing speed
and creativity make older individuals a burden. He notes that most great scientists, writers, composers, and artists
have made their most significant contributions by the time they are in their late forties or early fifties. He declares
that it is a rare individual who still has the intellectual capacity to produce great work past the age of 75, so we
It is quite
disturbing to read his cold assessment of those with even the most minor
disabilities associated with age. He has no respect for the elderly enjoying their golden years and
should stop striving for longevity at that point and refuse all life-prolonging medical care.
pursuing avocations instead of professional excellence: The American immortal, once a vital figure in his or her
profession and community, is happy to cultivate avocational interests, to take up bird watching, bicycle riding,
pottery, and the like. And then, as walking becomes harder and the pain of arthritis limits the fingers mobility, life
comes to center around sitting in the den reading or listening to books on tape and doing crossword puzzles. And
many of us would counter his arguments with a discussion of the noneconomic benefits the elderly provide. I have had the good fortune to know several centenarians in
then Of course,
my lifetime. They provided a window to the past that could not be captured in any history textbook. I think of my
relationships with several of my grandparents and great-grandparents who lived well past the age of 75 and know
that my life was immeasurably enriched by these encounters with my elders, even when they were challenged by
infirmities and disabilities. I hope to similarly influence my own grandchildren. Ezekiel Emanuel discounts any value
to familial relationships. In fact he states, Our living too long places real emotional weights on our progenythere
is much less pressure to conform to parental expectations and demands after they are gone. His further
for cancer, no flu shots, no antibiotics. Palliative care to keep the elderly comfortable is all that he sees as
reasonable. Here is where Emanuel errs most dramatically. He is judging the patient as to his worthiness for
treatment, instead of judging the treatment as to its worthiness for the patient. There is no question that there are
many medical tests and treatments that are not appropriate for patients over the age of 75. Following cholesterol
levels, screening mammograms in asymptomatic women, screening colonoscopies for colon cancer are all tests that
can be discontinued by this age. However, the reason is not that patients over the age of 75 are not valuable
enough to receive this medical care. It is that the burden these tests impose on the elderly is not justified by the
expected benefit of these tests. Decisions about the appropriateness of any medical test or intervention need to be
made on an individual basis, taking into account the specific burden to benefit analysis for a given treatment in a
given patient. Arbitrarily declaring that all those over the age of 75 are unworthy of anything but palliative medical
care is unjust ageism. Caring for an elderly relative can present physical, emotional, and financial challenges. But
facing these challenges is an opportunity for great spiritual growth . We are better people
and create a better society when we generously love and care for those with infirmities and disabilities. Through
their lives, the elderly generously offer us the opportunity to cultivate virtue. As Pope Francis said, A population
that does not take care of the elderly and of children and the young has no future, because it abuses both its
whether we return to the worms. We are agnostics or atheists, or just dont think about whether there is a God and
why she should care at all about mere mortals. We also avoid constantly thinking about the purpose of our lives and
the mark we will leave. Is making money, chasing the dream, all worth it? Indeed, most of us have found a way to
live our lives comfortably without acknowledging, much less answering, these big questions on a regular basis. We
Emanuel that he
cannot see the value of human life in any terms other than economic productivity .
have gotten into a productive routine that helps us ignore them. I actually feel sorry for Ezekiel
How sad that he does not cherish the rich dimensions the elderly add to our lives. We learn from their experiences,
their faith, and, yes, even their suffering. The question before us in American health care policy is whether or not
we will value each human life from the moment of conception to the moment of natural death and treat each
Disease Outweighs
Disease is the greatest impact- more people die from disease
than all wars combined- disease spread is the root cause of
structural prejudice and the biggest threat to security
Selgelid 9 (M.J. Selgelid. Center for Applied Philosophy and Public Ethics (CAPPE),
The Australian National University, Canberra, Australia. Public Health: Pandethics.
2009. http://www.sciencedirect.com/science/article/pii/S0033350608003314)//EMerz
The ethical importance of infectious diseases is partly revealed by the fact
that their consequences are almost unrivalled.1 Historically, they have
caused more morbidity and mortality than any other cause, including
war.2 The Black Death eliminated one-third of the European population over the
course of a few years during the mid 14th Century; tuberculosis killed 1 billion
people from 1850 to 1950; the 1918 flu killed between 20 and 100 million people;
and smallpox killed between 300 and 500 million people during the 20th Century
alone, i.e. three times more than were killed by all the wars of that period.
Infectious diseases are currently the biggest killers of children and young adults,
and the continuing threat of infectious diseases is revealed by the emergence of
many new infectious diseases during recent decades [including human
immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), Ebola,
severe acute respiratory syndrome (SARS) and avian influenza], the growing
problem of drug resistance and the spectre of bioterrorism. Second, infectious
diseases raise difficult ethico-philosophical questions of their own. Although
measures such as surveillance, mandatory treatment and vaccination, isolation and
quarantine may sometimes be important to the protection of public health, they
may each involve infringement of basic rights and liberties, i.e. the right to privacy,
informed consent to medical intervention, and freedom of movement. Given that
most deny that either the goal to promote public health or the goal to protect
individual rights and liberties should always take absolute priority over the other, a
difficult ethical question is how to strike a balance between these two types of goals
in cases of conflict. Third, the topic of infectious disease is closely connected to the
topic of justice. Malnutrition, dirty water, overcrowded living and working conditions,
lack of sanitation and hygiene, poor education, and lack of access to health care
make poor people more likely to become infected and more likely to suffer poor
outcomes when infection occurs. As bad health, in turn, exacerbates poverty, a
vicious cycle promotes both poverty and disease. Fourth, infectious diseases are
prone to promote fear, panic, stigma, discrimination, and emotional and
irrational decision and policy making. Fifth, and finally, infectious diseases
pose threats to security. Security dangers are associated with fast-moving
infectious disease outbreaks that overwhelm response capacity and cause
chaos. In 2007, the World Health Organization described pandemic influenza as
the most feared security threat,8 and former US President George W. Bush
suggested that a military response may be necessary in the event of a flu
pandemic. Security may also be jeopardized for economic reasons in the case of
Governments worldwide need to increase the priority given to fighting noncommunicable diseases especially in the poorest nations, the World Health Organization says. The sense
of urgency by WHO is driven by the high and projected increases in the prevalence rates of noncommunicable diseasescardiovascular diseases, cancers, diabetes, and chronic lung diseases. These
four major groups of diseases share four risk factorstobacco use, unhealthy diet, physical inactivity, and the
harmful use of alcohol. Ala Alwan, WHOs top official for non-communicable diseases and mental health, said, The
reason for the focus on these four major group of diseases is because they are responsible for about 80-85% of
mortality due to chronic diseases, and because they also share the same risk factors. Dr Alwan told reporters the
line. We see higher levels of risk factors like tobacco, and overweight and obesity in the lower social-economic
class[es] and we also see the highest prevalence of diabetes occurring in developing populations, he said. Dr
Alwan, a former minister of health of Iraq, also highlighted that
largely preventable if we address risk factors with tobacco control, address unhealthy diet and physical
inactivity. He said international efforts to implement a global strategy to control and prevent non-communicable
diseases is leading to the development of indicators similar to the millennium development goals together with a
monitoring mechanism. Greater priority needs to be given to non-communicable diseases
in health and broader development agendas, he said. Dr Alwan added that the private sector, including the food
and beverages industries, also has to provide some solutions. These include responsible marketing, especially for
children, and a greater emphasis on more healthy products.
Americans are inundated with media coverage and politicians warning them of dire
threats: Ebola, the Islamic State of Iraq and Syria (ISIS), the war on Christmas. The truth, though, is that
the most-hyped threats are often not actually that threatening to Americans, while
larger dangers go mostly ignored. That should tell you something about how our political system and
media can distort threats, leading Americans to overreact to minor dangers while ignoring the big, challenging,
divisive problems like climate change that we should actually be worried about. An actual poll featured on
the United States sorted by the current danger to Americans, worst-case danger to Americans, and how freaked
out you should be. 9) Ebola Threat to Americans: If you are an American in West Africa in close proximity with
Ebola victims, the threat is moderate. If you are an American health worker in the US assisting an Ebola victim or
someone who frequently comes into physical contact with one, the threat of infection is minor if you use proper
protective equipment. Otherwise, the threat is pretty close to zero. Worst-case scenario: The outbreak could get
much worse in West Africa, but even in that scenario the disease will remain unlikely to affect many Americans
outside of the region. How freaked out should you be: If you have loved ones in Liberia, Sierra Leone, or Guinea, it
is not unreasonable to urge them to take all possible precautions. Otherwise, you would do better to worry about
the other items on this list. A health worker demonstrates Ebola treatment practices in London (Dan
Kitwood/Getty) 8) Your own furniture Threat to Americans: According to a report by the Consumer Product Safety
Commission, just under 30 Americans are killed every year by "tip-over," which is when "televisions, furniture, and
appliances" fall onto their owners. The report also found that over 40,000 Americans receive "emergency
department-treated injuries" from tip-over every year. Worst-case scenario: This is America. We can always find
ways to make a bigger, heavier, deadlier TV. How freaked out should you be: Council on Foreign Relations scholar
Micah Zenko found that tip-over kills about as many Americans per year as terrorism does, and injures many more.
In theory, then, you should be just as freaked out by tip-over as you are by terrorism. Based on the fatality rate, you
should be much more freaked out about tip-over than you are about Ebola. 7) ISIS Threat to Americans: Presently,
boast thousands of fighters (some with Western passports), earn lots of oil revenue, and field heavy US-made
weapons seized from the Iraqi army. Oh, and it now has access to rotting but still-deadly chemical weapons. They
could decide to use those resources to try to attack the US, or could allow other terrorists to use their territory as a
safe haven. How freaked out should you be: Not very. If ISIS decides to turn its attention to attacking the US, the
prospect it might succeed is real, but remote. And even if it did pull off a successful attack, it would almost certainly
kill only a small fraction of the number of Americans that guns and cars are virtually certain to kill every single
year. Smoke from a battle between Iraqi Kurds and ISIS (SAFIN HAMED/AFP/Getty) 6) The flu Threat to
Americans: The flu kills thousands of Americans every year, many times more people than Ebola. The elderly and
infirm are especially at risk. Worse-case scenario: An especially bad outbreak in 2004 killed 48,000 Americans.
How freaked out should you be: If you're elderly, very young, or immunosuppressed, you should get a flu shot or
nasal spray immediately. (Even if you're not, you should still get off your lazy butt and get a flu shot, unless you are
some kind of monster who doesn't care about herd immunity.) But if you're young and otherwise healthy, you'll
No
one wants a global thermo-nuclear war between the West and Russia, including Vladimir Putin.
probably be fine even if you do catch the flu. 5) World War III breaking out in the Baltics Threat to Americans:
But his meddling in Baltic NATO countries like Estonia, which the US and Western Europe are committed to defend,
could inadvertently trigger what we avoided throughout the Cold War: open military conflict between the major
nuclear powers. Both Putin and President Obama have threatened as much to try to scare one another out of acting
aggressively. Worst-case scenario: Russia does in Estonia what it did in Ukraine, that snowballs into war between
Russia and the US/NATO, and the nukes start falling. How freaked out should you be: To be very clear:
the odds
of this happening are extremely low. But the danger is real enough that everyone is taking it seriously
(Russia is holding major nuclear exercises). If it did happen, it would be many, many times worse than every other
item on this list combined. Russian tanks in a military parade in St. Petersburg (OLGA MALTSEVA/AFP/Getty) 4)
Climate change Danger to Americans: Potentially dire. The greatest near-term harm may be from a rise in extreme
weather events. Over the next 100 years, that could include deadly heat waves, droughts, flooding, and a rise in
sea levels that would affect coastal cities. Worst-case scenario: The world is trying to limit the global temperature
rise to 2C, because any more than that is considered dangerous. A temperature rise of 4C would cause
"substantial species extinctions" and "large risks to global and regional food security," as well as rising sea levels,
according to the Intergovernmental Panel on Climate Change. In other words, a total catastrophe. How freaked out
should you be: If you care about the world your kids and grandkids will grow up in, pretty freaked out. Averting
disaster requires immediate, massive, global cuts to carbon emissions. With the US and China particularly dragging
their feet, it may simply be too late. 3) Guns Danger to Americans: Guns kill more than 30,000 Americans every
year, about as many deaths as caused by motor vehicles. But only about one in three of those deaths is a homicide.
A few thousand are from accidents but most are due to suicide. Worst-case scenario: We have already chosen to
live in a society with the world's highest gun ownership rate and some of its loosest gun control laws, so the worstcase scenario is pretty much here. Still, gun deaths per year are on the rise. How freaked out should you be: It all
depends on whether you see America's uniquely permissive gun laws as worth the trade-off. But you and, yes,
your children are at risk, regardless of your views about gun regulations. A customer inspects a totally legal
AR-15 assault rifle at a gun store in Wendell, North Carolina (Chuck Liddy/Raleigh News & Observer/MCT via Getty)
2) Traffic accidents Danger to Americans: Very high. About 34,000 deaths in 2011 (the last year with complete
data), more than one in four of all deaths related to unintentional injures. Worst-case scenario: Drunk driving. Don't
do it. How freaked out should you be: The motor vehicle death rate is declining, but getting in your car is still
How freaked out should you be: The odds are that one of these two things will kill you, so you should be thinking
public health with a concentration in epidemiology. For six years, he worked for the
New Jersey Department of Health in risk assessment as well as legislative and
regulatory review, and finally served as Emergency Response Coordinator. Dr. Milne
joined Tufts University's Center for the Study of Drug Development in 1998 as a
Senior Research Fellow, after graduation from law school. His research interests
include the evaluation of regulatory initiatives affecting the pharmaceutical and
biotechnology industries, and incentive programs for the development of new
medicines for neglected diseases of the developing world. Dr. Milne is currently
Assistant Director at the Center and a member of the bar in New Hampshire
(Christopher, Racing the Globalization of Infectious Diseases: Lessons from the
Tortoise and the Hare, 11 New Eng. J. Int'l & Comp. L. 1)
Although we have faced planet-killing events such as nuclear brinkmanship during the Cold War and megameteors colliding with earth in pre-history, the most imminent threat is one we face everyday from the
globalization of infectious diseases. Leading authorities in government, medical institutions, and schools of public health have
been ringing the warning bell for over a decade about the major threats to global public health. 2Link to the text of the note Threats such as
infectious diseases in the developing world, drug resistant bacteria, and the problem of multiple HIV
strains, remain unaddressed. The public health community lacks answers to key scientific questions for an AIDS vaccine, and needs
to press harder on research for a tuberculosis (TB) vaccine, a process which could take twenty to fifty years. 3Link to the text of the note Experts
believe that the threat warning level has risen from orange to red , comparing the
circumstances favoring a pandemic today to the "Perfect Storm," due to the continuing increase of
worldwide antimicrobial resistance, diminished U.S. capacity to recognize and respond to microbial threats,
and the likelihood of intentional releases of biological agents . The sources of this public health challenge derive from
a panoply of emerging and re-emerging natural plagues, thirty of which have been recognized just in the last few decades with thirteen occurring in North
America. 4Link to the text of the note According to Anthony Fauci, Director of the National Institutes [3] of Allergies and Infectious Diseases (NIAID),
emerging diseases are defined as ones that have not been previously recognized, such as acquired immunodeficiency syndrome (AIDS) or severe acute
respiratory syndrome (SARS). Comparatively, re-emerging disease has usually been in existence for a long time but has changed location, as did the West
Nile Virus. Dr. Fauci considers bioterrorism to be a part of the continuum of emerging and re-emerging diseases, and points out that when it comes to
SARS-like diseases. Part II of this article will discuss the scenarios for a global pandemic presented by SARS, AIDS, or bioweaponized incarnations - what
they have done, what they could do, and why it is so hard to stop them. Part III will describe the scope of the public health problem, particularly the
globalization factors that serve as enablers of the pandemic potential of these diseases, as well as a host of ill-defined "x" factors that have served to
further complicate the dynamics of dealing with these global killers. Part IV will consider solutions to the problem by discussing what we have versus what
we need. Part V will present recommendations for how government, pharmaceutical and biotechnology industries, as well as international nongovernmental organizations can be part of the solution. Lastly, Part VI provides a conclusion. "Ring around the rosie, pocket full of posies, Ashes, ashes we all fall down!" - According to legend, a children's rhyme dating from the time of the plague in medieval Europe. II. Scenes from a Plague SARS has
been compared to the bubonic plague of the Middle Ages, but the Black Death was not a "fast epidemic" due to the limitations of its [4] mode of
transmission, as well as the modes of medieval transportation. While SARS is somewhat comparable to flu epidemics of the last century and to the
putative bioterror agents of today, AIDS has the dubious distinction of being closer to the experience of the Black Death. However, unlike that ancient
pandemic, which was more limited temporally and geographically, AIDS is embarking upon what, Dr. Peter Piot, executive director of UNAIDS, refers to as a
"true globalization phase." 8Link to the text of the note A. Black Death Redux The superlatives used to describe the public health impact of AIDS never
seem to be exhausted. One commentator noted that AIDS will soon exceed the death toll of the Bubonic Plague, making it the most "numerically lethal
pandemic" the world has ever known. 9Link to the text of the note The World Health Organization (WHO) refers to it more prosaically, but with similar
notoriety, as the "toughest health assignment the world has ever faced." 10Link to the text of the note Even after twenty years, AIDS is still something of a
medical and scientific conundrum. Diversity of the virus increases with duration of infection, further complicating drug treatment. 11Link to the text of the
note Vaccine development is similarly complicated due to existence of ten major genetic types or clades of HIV-1, each with a distinct geographical
spread. 12Link to the text of the note What we do know is that AIDS is caused by an infection with the human immunodeficiency virus (HIV), transmitted
through unprotected sex, sharing hypodermic needles, transfusions of contaminated blood, or from mother to child during pregnancy, labor, delivery, or
breast-feeding. The virus attacks the immune system by infecting white blood cells, known as CD4+ cells, making it difficult for the body to fight off
infections. AIDS itself is considered the final stage of HIV disease. 13Link to the text of the note Without treatment, HIV will progress to full-blown AIDS
within nine to eleven years, and is usually fatal within two years after that point. 14Link to the text of the note The AIDS/HIV toll is [5] approaching forty
million infected, with fourteen thousand new infections daily and ninety-five percent of new infections occurring in the developing world. 15Link to the text
of the note What we do not know is just how soon and how much of an impact AIDS will have. In sub-Saharan Africa, only an estimated ten percent of the
predicted illness and death has occurred; the full impact on people, communities, and economies is still to come. 16Link to the text of the note
Nonetheless, one forecast is that seventy million will die of AIDS by 2020, mostly in Africa and Asia. 17Link to the text of the note Besides its own deathdealing impact, AIDS exacerbates the morbidity and mortality of other "slow epidemics" like malaria and tuberculosis, and drains resources that would
otherwise be dedicated to their treatment. 18Link to the text of the note By 2010, a report by the Central Intelligence Agency (CIA) states that five
countries - Nigeria, Ethiopia, Russia, India, and China - will suffer a total of fifty to seventy-five million cases of HIV/AIDS. 19Link to the text of the note For
a preview of the AIDS wasteland that faces us without a serious course change, consider the devastation wrought by AIDS on Botswana. Before the AIDS
epidemic reached Botswana in the early 1990s, per-capita income had risen tenfold over the previous thirty years, primary school enrollment had doubled,
and infant mortality had decreased almost threefold. A decade after AIDS swept over the land, thirty percent of the country's economic growth was erased
and the number of years each citizen is expected to contribute to the economy has been reduced from fifteen-to-thirty productive years to just five.
Moreover, one-fifth of Botswana's children will soon be AIDS orphans. 20Link to the text of the note Botswana now has the lowest life expectancy of any
country in the world at 30.8 years of age, which is about three times less than the highest life expectancy of 83.5 years in the European nation of Andorra.
21Link to the text of the note At the current pace, close to [6] fifty percent of the world's population could live in countries gripped by the AIDS pandemic
by the end of the decade. B. Cold Virus on Steroids The official acronym for severe acute respiratory syndrome is SARS-CoV, which derives from the fact
that it is a coronavirus, the same family of viruses that cause the common cold. However, SARS acts more like a cold virus pumped up on anabolic
steroids. According to statistics, the recent outbreak of SARS was both debilitating and deadly: eleven percent of its victims died; sixty percent required
hospitalization; twenty to thirty percent needed treatment in intensive care units with intubations; six to twenty percent suffered respiratory sequelae; and
thirty to sixty percent experienced post-traumatic stress. 22Link to the text of the note Ultimately, the SARS pandemic led to ten billion dollars in
economic losses. 23Link to the text of the note The SARS incubation period is typically six days, but can range anywhere from two to twenty days. SARS
is more environmentally stable than other respiratory viruses. However, unlike most respiratory viruses the role of seasonality is unknown, noting that
most respiratory viruses are winter creatures. SARS is primarily transmitted by respiratory droplets or fomites (i.e., inanimate objects or substances that
transfer an infectious agent), in health care and hospital settings, but also by contaminated sewage. Old age and co-existing illness are contributory
factors to SARS, but children tend to contract a more mild form of the illness. SARS is believed to be of an animal origin, but unlike most other species
jumpers, SARS has also become efficient at human-to-human transmission. 24Link to the text of the note Although we are still learning from the SARS
expert, "the new normal" has become a public health problem uniquely created by globalization. 31Link to the text of the note A. The Global Village: A
Good Place to Raise Deadly Offspring 1. The Urbanization Triplets: Crowding, Poverty, and Destruction of Habitat Certain sequelae of globalization have
been identified as facilitating the spread of global infectious diseases. Urbanization, which is defined as rapid population growth in the cities, especially in
tropical and subtropical areas in less developed countries, results in large populations coming into closer contact with one another, increasing the
probability of infectious diseases. Urbanization is also characterized by poverty and poor sanitation. 32Link to the text of the note Poverty is considered
both a cause and an effect of widespread disease. For instance, poverty often results in malnutrition, which in turn weakens the population's ability to fight
off diseases, such as malaria. Malaria can cause the deaths of up to half of a million children per year in sub-Saharan Africa alone, resulting in a loss of one
percent of the region's GNP. 33Link to the text of the note Urbanization and poverty also contribute to overcrowding in hospitals and health care facilities,
which then leads to a struggle with sterilization and isolation procedures. Cross-contamination through blood and instruments occurs more readily. Due to
the favorable environment, microbes increase in number and become more diverse through mutations. If a virulent "bug" pops up, it has a good chance of
becoming established quickly. Urbanized areas are often large population centers and are served by [9] modern transportation routes. Once an individual
becomes infected, they are only a plane ride away from anywhere in the world. 34Link to the text of the note Urbanization also causes destruction of
natural habitats, resulting in the release of previously unknown infectious diseases. Many such diseases have been unleashed by the increased human
contact with animal reservoirs, due to altered land-use patterns and changing movement of animal and human populations. 35Link to the text of the note
In fact, many of the thirty or so new pathogens recognized in the past three decades originated in animals. 36Link to the text of the note 2. The "T-way"
of Global Plague Through the pathways provided by the "3Ts" of globalization -
inadvertently
. Two million people travel internationally everyday, 37Link to the text of the note with
approximately five hundred million traveling by commercial airlines every year, 38Link to the text of the note and millions of tons of food, hazardous
materials, and waste in transport daily. 39Link to the text of the note With international travel increasing by fifty percent each decade, the prospects of
containing new outbreaks of disease are diminishing. 40Link to the text of the note We are no longer protected by formerly formidable natural barriers like
oceans, and even less so by artificial barriers, such as political borders. B. The "X" Factors: The Known, the Unknown, and the Unknowable The factors
discussed are complex and their impacts are still under study, but to some degree, they are "known" factors that are quantifiable in the calculus of
planning for the future. There are also a number of biological, environmental, socioeconomic, cultural, legal, and political factors that continue to crop up
in unpredictable manners. Some were previously unknown but have been factored into the problem equation. Others seem to be so random in occurrence
and incalculable as to outcomes [10] that the ultimate impacts remain "unknowable." 1. Microbial Resistance Resistant strains to antibiotics developed
within a few years of the discovery of antibiotics some fifty years ago. However, according to the United States Food and Drug Administration (FDA), the
difference now is that resistance is no longer an isolated problem, especially in hospitals. 41Link to the text of the note For example, in the United States,
about seventy percent of bacteria causing infections in hospitals are resistant to at least one of the most common drugs used to treat them. 42Link to the
text of the note In the United Kingdom, the infection rate for methicillin-resistant Staphylococcus aureus, a common hospital contaminant, has risen sixhundred percent over the last ten years. 43Link to the text of the note The WHO warned that due to the overuse of antibiotics in rich countries and the
under use in poor countries, drug resistance is a worldwide problem. The result is wasting of billions of dollars that could have been better spent on
research and development (R&D) for infectious disease treatments over the last few years. 44Link to the text of the note Antibiotics are not the only
medicines with resistance problems. The main drugs used to combat AIDS, the so-called anti-retrovirals (ARVs), are also a source of concern. A recent
study showed that ten percent of all newly infected patients in Europe 45Link to the text of the note are infected with drug-resistant strains. In San
Francisco, the rate is twenty-seven percent. 46Link to the text of the note According to a recent survey of infectious disease specialists in the U.S., only
forty-one percent of patients are able to be treated with the most commonly used ARV regimen, while another forty-five percent are on back-up regimens.
For fourteen percent of infected patients, treatment with ARVs has all but failed. 47Link to the text of the note [11] Experts agree that resistance is also a
problem in the developing world, 48Link to the text of the note further complicated by factors such as counterfeit drugs, irregular access to treatments,
environmental degradation, inconsistent compliance, and diversion of drugs to the black market. 49Link to the text of the note 2. Sociocultural None of
the problems associated with the globalization of infectious diseases seem to be confined to one part of the world. For instance, half of reported polio
cases worldwide occurred in Nigeria, due to disruption of vaccination efforts. This interruption stemmed from a rumor that the United States government
was clandestinely implementing population control by adding contraceptives to the vaccine. 50Link to the text of the note In the U.S., a surgeon recently
reported that a several-year-long effort to convince a hospital staff to regularly use a sixty percent alcohol gel for hand disinfection was almost thwarted
by a rumor that the gel would reduce fertility. 51Link to the text of the note Actions taken by the general public are often at cross-purposes with actions
taken to protect the public health. One of the most crucial problems involved with tackling AIDS in the developing world is the extreme fear and social
stigma associated with the disease. These sentiments are exemplified by violence and abuse against woman in Africa 52Link to the text of the note and
discrimination against HIV patients by their own families and hospitals in India. 53Link to the text of the note In the U.S., the population is so risk-averse
that the construction of three Biosafety Level Four labs in California, Texas, and Massachusetts are being vigorously disputed by residents. 54Link to the
text of the note [12] 3. Legal The criminal element always seems to find a way to further complicate an already complicated situation, which is not
dissimilar to opportunistic infections. Up to ten percent of the world's drug supply is counterfeit, and may be perhaps as high as fifty percent in many
developing countries. 55Link to the text of the note Diversion of medicines to the black market is most common in certain parts of the developing world,
but occurs universally. Serostim, a growth hormone prescribed to fight wasting syndrome in AIDS patients, has found an underground recreational use as a
bodybuilding drug in the United States. The drug costs about eighty thousand dollars for a year's supply, often paid for by Medicaid, but on the black
market, it can fetch two thousand dollars for a week's supply. 56Link to the text of the note Even a new disease, such as SARS, did not take long to
develop a criminal element. In May 2002, the FDA issued a special alert regarding internet marketing of bogus SARS prevention products. 57Link to the
text of the note In addition to violations of the law, tensions exist within the law as well. The needs of bioscience and the concerns for biosecurity are
often adverse. The regulations for "select agents" are so confusing that one researcher was reportedly arrested simply because he traversed a room where
a select agent was stored. 58Link to the text of the note Such incidents are one reason why an international group of scientists seeks to keep SARS off the
select agents list, arguing [13] that restrictions would stifle research and hurt public health efforts. 59Link to the text of the note However, other experts
acknowledge that the transfer of knowledge among scientists is often a leaky process, and scientists may become unwitting accomplices to global
bioterror. 60ALink to the text of the note careful balance must be struck between freedom in research endeavors and controls designed to prevent the
misuse of material and knowledge. 61Link to the text of the note Conflicts of law also exist between public health and privacy. Due to the evolving nature
of the newly implemented medical privacy regulations under the Health Insurance Portability and Accountability Act (HIPAA), 62Link to the text of the note
state health officials believe themselves to be limited in releasing information regarding deaths from the flu or other reportable diseases, due to new legal
protections afforded to patients. However, HIPAA contains a public health exception, and most officials argue that releasing certain information is required
by state public health laws to provide information about risk factors that the public should be aware of. 63Link to the text of the note The United States
Security and Exchange Commission (SEC) has become embroiled in this problem as well. SEC regulations are an issue, not only due to antitrust laws
prohibiting collaboration on countermeasures by "competing" companies, 64Link to the text of the note but also due to accounting regulations that
determine when a company can recognize revenue from a stockpile. Under the current scheme, the United States Department of Health and Human
Services (HHS) plans to purchase vaccines, but have companies store them until needed to avoid additional cost and logistical problems for HHS. Problems
then arise under current SEC regulations, as entities may not declare revenue from undelivered products. 65Link to the text of the note [14] 4. The
available for the establishment of eight Regional Centers of Excellence for Biodefense and Emerging Infectious Diseases Research (RCEs), stating: "These
new grants add to this effort and will not only better prepare us for a bioterrorism attack, but will also enhance our ability to deal with any public health
crisis, such as SARS ." 66Link to the text of the note Concern regarding the public health crisis precipitated by SARS was believed to have caused some
"holdouts" waffling on support of Bioshield to come on board. 67Link to the text of the note The President of the Association of State and Territorial Health
Officials believes that the infusion of dollars into bioterrorism awareness has helped to improve the public health system capacity to deal with health
emergencies in general. 68Link to the text of the note Internationally, the Security Council of the United Nations (UN) discussed a health issue for the
first time as a threat to world stability: HIV/AIDS in Africa. 69Link to the text of the note The African, Caribbean, and Pacific Ocean sectors of the World
Trade Organization (WTO) petitioned the WTO's Council for Trade-Related Aspects of Intellectual Property Rights (TRIPS) to find a solution to the deadlock
over access to affordable drugs, as the outbreak of diseases such as SARS had made it "a matter of urgency." 70Link to the text of the note The deadlock
was broken. In a report by the United States National Intelligence Council, experts emphasized the worldwide threat presented by infectious disease to
military capacity, socioeconomic development, international trade and travel, and global stability. 71Link to the text of the note [15] However, common
goals can sometimes result in competition instead of cooperation when time, money, and resources are limited. The media reported that National Institute
of Health (NIH) studies on AIDS, TB, malaria, and other infectious diseases would be shortened in length due to a White House mandate shifting funding to
development of an anthrax vaccine. 72Link to the text of the note While the NIAID budget grew twenty-fold from 1980 to 2004, the increase was mainly
due to efforts to combat changing priorities of life-threatening infectious diseases, such as AIDS in the 1990s and bioterror in the 2000s. 73Link to the text
of the note In fact, the NIAID budget allotment for AIDS R&D has flat lined for 2002 through 2005, while the biodefense budget went up from $ 200 million
in 2002 to $ 1.6 billion slated for 2005. 74Link to the text of the note In a survey of nearly four hundred scientists, forty-six percent felt that government
spending on bioterror R&D diverts monies from more important investigative work. 75Link to the text of the note Internationally, in January 2002, the
WHO's Executive Board stated that it was focusing attention on the health effects of poverty, but also needed to devote attention to preparations for
"newer threats such as the deliberate use of anthrax and smallpox agents." 76Link to the text of the note C. The World as a Marketplace, Health Care as
a Business Due to the globalization of infectious diseases, the distinction between national and international public health programs have as little
relevance as political borders. 77Link to the text of the note However, this also implies that public health counter-measures must be considered within the
context of market realities driving globalization. There is a strengthening current within the international public health community to consider access to
health care as a universal human right shared by rich and poor alike. 78Link to the text of the note However, one must inquire: Where does the money for
health research come from? Independent [16] foundations and charities contribute only about four percent of the billions spent globally each year on
health research. 79Link to the text of the note Regarding medicine, a sizeable amount of the funding for basic research comes from governments, but the
lion's share of the funding for applied research that turns concepts brewing in test-tubes on lab benches into bottles for injection on clinic shelves comes
from private industry. In particular, these are the major pharmaceutical companies, also known as "big pharma." 80Link to the text of the note They don't
call it big pharma for nothing! The industry's financial might and resources are impressive. When the list of the world's one hundred largest public
companies by market value is released each year, close to one-fifth are pharmaceutical companies. Monsanto, a life-science multinational corporation, has
a R&D budget more than twice the R&D budget of the entire worldwide network of public sector tropical medicines research institutes. 81Link to the text
economic and political realities of globalization are actualized. According to previous work on providing incentives to industry to conduct R&D for
neglected parasitic and infectious diseases in the developing world, five disincentives must be addressed: lack of interest on the part of big pharma; an
unfavorable cost/risk ratio for big pharma; the fact that only impoverished markets exist for the products of such R&D; the difficulty of directing capacity in
the Northern hemisphere to address the needs of the South; and the realities of the vaccine market. 82Link to the text of the note