Teaching MCH

Ethics
Kay M. Perrin, PhD, MPH,
RN
University of South Florida
College of Public Health
APHA, November 2004

TEACHING MCH ETHICS

MCH Competencies
Historical background as a
foundation of medical ethics
Major ethical principles
Development of ethical morals and
values
MCH case studies
Discussion and reflections

MCH COMPETENCIES
MCH Professionals should have knowledge
and understanding of:
The philosophy, values, and social justice
concepts associated with public health
practices in MCH
The principles and issues involved in the
ethical conduct of practice and research
within MCH populations, organizations,
agencies including data collection,
management, analysis and dissemination

 The philosophical concepts and

rationale underlying the delivery of
family-centered, comprehensive,
community-based and culturally
competent MCH programs
including community assets

MCH Professional should be able to

demonstrate the following skills:
Ethical conduct in practice, program
management, research, and data collection
and storage
Promotion of cultural competence concepts
within diverse MCH settings
Ability to build partnerships to foster
community empowerment, reciprocal
learning and involvement in design,
implementation, and research aspects of
MCH programs

HISTORICAL BACKGROUND
Nuremberg Code of 1947
Helsinki Declaration of 1964
1974 U.S. Federal Regulations:
National Commission for
the Protection of Human
Subjects of Biomedical and
Behavioral Research

1920:
Life

Permission to Destroy
Unworthy of Life

Doctors should be allowed to kill:

Terminally ill or mortally wounded
incurable idiots whose lives are
viewed as pointless or valueless
with an emotional or economic
burden on family
Unconscious who would waken to
nameless suffering

1924: Carrie Buck

Poor, powerless, daughter of a prostitute

Pregnant out-of-wedlock by foster father
Mother in jail; baby not quiet normal
3 generations of idiots is enough
(Justice Oliver Wendell Holmes)
In U.S. 60,000 people legally,
involuntarily sterilized between 1907
and 1960

1980s: Dehydrating Cognitively

Disabled Persons
1st: Dehumanized persons
2nd: Gave moral permission to
families and doctors to withdraw
basic sustenance
3rd: Urged courts to make
dehydration a legal right to die
Today: Causing death by
dehydration is legal in all 50 states

MAJOR ETHICAL PRINCIPLES

Beneficence
Justice
Utilitarianism
Confidentiality
Autonomy / Informed
Consent

Beneficence
Do not harm
Maximize possible benefits
Minimize possible harm
Direct benefit to subject
Overall benefits to society

Justice
Fair distribution of benefits

Equal
Equal
Equal
Equal
Equal

shares
individual need
individual effort
societal contribution
merit

Utilitarianism
Acknowledges that the pains of
some may have to be accepted in
particular situations in which the
best realization of value for
everyone affected makes them
unavoidable
Greatest good for the greatest
number

Confidentiality
The importance of the patient being
able to trust their health care provider
to not reveal personnel and private
information without the persons
permission
Goal: Accurate diagnosis depend on a
complete history
Goal: Society benefits, such as with
reported diseases, by protecting others

Justification of confidentiality
breach
A threat to the patient
A threat to other unidentified persons
A threat to some other specific
individual
EX: Child abuse and specified contagious
diseases

When benefits from the breach

outweigh the wrong to the patient

Reportable Diseases in Maryland

AIDS
Amebiases
Animal bites
Anithrax
Arbovirals
Botulism
Brucellosis
Cholera
Coccidiodomycosis
Cryptosporiasis
Dengue fever
Diptherea
Ehrlichiosis
Encephalitis
Epsilon toxin
Giardiasis
Glanders Conococcal infection
Heamophilus influenza
Hepatitis
Isosporiasis
Kawasaki syndrome
Legionellosis
Leporsy
Leptospirosis
Listeriosis
Lyme disease
Malaria
Measles (rubeola)
Meningitis, infectious
Meningococcal
Microsporidiosis
Mumps
Mycobacteriosis
Pertussis
Pesticide related illness
Plague
Pneumonia in a health care
worker
Polionyelitis
Psittacosis

Q fever
Rabies
Ricin toxin
Rocky Mountain spotted fever
Salmonellosis
Septicemia in newborns
SARS
Shigellosis
Smallpox
Staphlococcal B
Strep A and B
Syphilis
Tetanus
Trichinosis
Tuberculosis
Tularemia
Typhyoid fever
Varicella fatal cases only
Vibiosis
Viral hemorrhagic fevers
Yellow fever
Yersiniosis*
(Dept of Health, Maryland 2004)

Autonomy
Freedom to make individual choices
Given adequate information
By building on the definitions of
these basic ethical principles, we
are led into a discussion about
informed consent

Informed Consent
A process involving discussion
between a provider and a patient.
It is not the signing of a consent
form.

Elements of Informed Consent

Diagnosis
Nature of the proposed treatment
Purpose of the proposed treatment
Risks and side effects of the
proposed treatment
Probability that the proposed
treatment will succeed

 Alternatives to the proposed

treatment
Fore each alternative, discuss its risks
and benefits
Consequences of no treatment
should always be discussed

 Exceptions to informed consent

Emergencies if there is no time to get a
persons consent, but it is likely that they
would have consented
Therapeutic Privilege a providers
determination that knowing the complete
truth might harm the patient; rarely used
Incompetent Patients since the patient
cannot consent, one must find out who is
authorized to consent on their behalf

Physician: Legal Standard of

Informed Consent
As a legal standard, informed consent is
imposed retrospectively
Courts are involved only after a
malpractice suit is filed
Prospective review is not conducted,
because such review would be intrusive
into the professional relationship of
physician and patient
Goal: patients well-being

Researcher:Legal Standard of
Informed Consent
The researcher is subject to
prospective and continuing review
requirements, including explicit and
detailed standards for the information
disclosed
Goal: Gather evidence or data for
testing a hypothesis with a goal of
advancing scientific knowledge rather
than benefiting the subject

Additional information for research

protocols when obtaining informed
consents
A description must be given of the
confidentiality of research records
and data
An explanation must be given of
the availability or unavailability of
compensation or treatment for
injury

 Identification must be made of whom

to contact for answers regarding the
conduct of the research and the
subjects rights as well as whom to
contact in the event of an injury
An explanation must be given of the
subjects rights to refuse participation
and to withdraw from the study

 Information regarding currently unforeseeable risks

Reasons why an investigator might expel a subject
from a study
Identification of additional costs to the subject
incurred as a result of participation in the study
Consequences of the subjects withdrawal from the
study
Information about pertinent findings
Information about the number of subjects
participating in the research

DEVELOPMENT OF ETHICAL
MORALS AND VALUES
Good ethics begin with good facts
Ideally, discussing case studies results in:
Some narrowing of disagreements and
differences
Some knowledge gained

It is not always easy to discern the right

answer to an ethical problem, but it is often
easy to identify a wrong answer
Bad facts, failure to consider alternatives, or
inconsistent reasoning

MCH CASE STUDIES

Four questions for each case study:
Uncertainty about the utility and safety of
the research / technique / treatment
Moral uncertainty about the justifications
for the research / technique / treatment
Conceptual uncertainty about the
patient it serves
Social uncertainty about its long-term
effects

EXAMPLES OF MCH CASE

STUDIES
Circumcision
Women in research or not
Prenatal testing
Behavior of pregnant women
Designer babies
Abortion and embryo adoption
Conflicts of interest among
pharmacists

Circumcision
March 1999 AAP concluded that the
health benefits of this practice do not
justify routine circumcision
1970 AAP no medical indication
1989 AAP concluded potential benefits
If we allow this risk to children to meet
the cultural or religious need of
parents, how do we determine when
other cultural needs should triumph?
Comparison of pediatric data with
womens health data = conflicting results

Women in research or not?

Baltimore Longitudinal Study (started in
1958) no women for first 20 years
Physician's Health Study 22,000 men
and no women (Harvard Aspirin study)
1982 Multiple Risk Factor Intervention
Trial (Mr. FIT) 13,000 men and no
women
Harvard caffeine and heart disease
study 45,000 men and no women
Framingham Study longitudinal study
with no women

Continued
1908 heart disease is one of the
best-kept secrets of womens health
1964 American Heart Assoc. first
conference on women and heart
disease
Title: Hearts and Husbands: The First
Womens Conference on Coronary Heart
Disease How to Care for Your Man
No discussion about self-care

Continued
1950 thalidomide and DES - meant that no
woman between the ages of 15 and 50 could
no longer participate in new drug research
unless she had been surgically sterilized
However, researchers did not exclude men
even though Proscar, a drug used to treat
enlarged prostate glands, was found to cause
birth defects; men sign a statement saying
that they would use condoms
Implication: women have no control over
their reproductive lives

Prenatal testing
Right of prospective parents to
reproduce children with genetic
anomalies vs. the moral duty not to
knowlingly reproduce an affected child
The future persons right to not be born
with genetic anomalies outweighs the
prospective parents right to give birth
The harm to the child, family and
society-at-large have an impact on the
moral acceptability of these decisions

Behavior of pregnant women

Increasingly, the fetus is seen as a
medical patient in its own right a
patient whole quality of life can only
be protected by recognizing its
individual interests
When the womans behavior is seen
has harmful, does society have a
right to control her behavior?

Designer babies (gender

selection)
PGD (Pre-implementation Genetic
Diagnosis) allows physicians to screen
embryos for a wide range of possible
diseases as well as for gender. Suitable
embryos can then be implanted, while the
future parents may decide not to implant
other embryos. These other embryos may
be destroyed or given to other infertile
couples, where they will be implanted in
the woman and brought to term.

Abortion or embryo adoption

Ever since it became possible to freeze embryos
as part of the process of assisting in reproduction,
doctors and couples have faced a growing
problem: What to do with the frozen embryos?
Save embryos for second attempt?
Donations akin to organ donations?
Legal screening as with adoptions?
Erosion of abortion laws if embryos are viewed
the same as adoptions?
Sharing information with child later for medical
purposes?

Conflicts of interest among

pharmacists
Most pharmacists who work in retail pharmacies
have a serious potential conflict of interest. On the
one hand, they are professionals, expected to be
knowledgeable about drugs and to dispense them
in a responsible and ethical manner. On the other
hand, their income depends on the sale of
products. Before the FDA's OTC (Over-the-Counter)
Drug Review drove most of the ineffective
ingredients out of OTC drug products, few
pharmacists protected customers from buying
products that did not work.
Do MCH professionals ever profit (grants, data,
tenure) at the expense of patients?

Issues related to research at

universities
Universities being driven by research
dollars rather than teaching evaluations
Relentless time and financial constraints
to produce data for funding source
Teaching hospitals often represent a
place where vulnerable populations with
specific medical conditions are brought
together in one location

Watchdog citizen group tracking

unethical medical research
CIRCARE:
Citizens for Responsible Care
and Research

veracare@erols.com

DISCUSSION AND
REFLECTION
We in the U.S. dont have systemic
atrocities, we have
compartmentalized atrocities. But
the intellectual underpinnings for the
good of science; for the
advancement of knowledge; for the
benefit of society; for the national
interest (Biomedical ethicist at the Maryland
School of Medicine)

Example: Baby Doe (U.S.)

Downs syndrome and parents
refused surgery; ordered doctors to
withhold food and fluids thus
dooming her to death
If a normal child were neglected
to death, parents and doctors
would be charged with child abuse
and murder

Surgeon General Koop

The greatest protection that disabled
newborns have in the U.S. is the concern
on the part of the doctors who care for
the newborns that someone is watching;
considering the increasingly utilitarian
state of medical ethics and the pressures
placed on doctors by managed care
companies to cut the costs of health care,
that protection may be scant indeed.

Peter Singer
Infants have no moral right to live
Infanticide at the request of the parents
is ethical so long as it toll promote the
overall interests of the family and society
Instead of going forward and putting all
our efforts into making the best of the
situation, we can still say no, and start
again from the beginning.
Rethinking Life and Death: The Collapse of
Our Traditional Ethics (his book)

What can we do to improve the

value system in institutions?
More effort must be made to integrate
values into the social fabric of the
institution: supportive, compassionate,
thoughtful.
Greater emphasis on learning and less on
evaluation to decrease cheating and
dishonesty.
Engage faculty and students in a series of
discussion regarding the ethical foundations
and core values of the professionalism

Conclusion
Public health cannot compromise on value
systems
Teaching values is particularly difficult
when education has become a trade with
lots of money involved (Sheriff and
Manopriya, 2000).

Students learn a professional value system

as it is portrayed by the institution they
attend and by the faculty attitudes towards
each other and towards their profession.

Thank you
Any comments?