Journal of Genetic Counseling, Vol. 3, No.

3, 1994

Code of Ethics: Day-to-Day Applications

Judith L Benkendorf, 1,2 Nancy P. Callanan, 3 Rose Grobstein, 4
Susan Schmerler, 5 and Kevin T. FitzGerald 6

The following article was originally presented as a workshop at the 1992 NSGC
Annual Education Conference. It was the first in a series of programs designed
to fulfill the educational component of the Board of Directors' charge to the
Ethics Subcommittee of the interpretation, education and application of the
Code of Ethics. Applications of the Code to actual problems experienced by
genetic counselors are presented. The Code is shown to be a practical guide
in the areas of confidentiality and patient advocacy. Because the Committee
has received several communications regarding sexual harassment, the need
for addressing this issue seemed particularly timely. The third scenario presents
a more general discussion regarding this topic.
KEY WORDS: Code of Ethics; genetic counseling; dilemmas.

INTRODUCTION
In January of 1993 the NSGC officially adopted its own Code of
Ethics. A reasonable question to ask is: What impact might the use of this
Code have on the NSGC, and on health care in general? More to the
1Department of Obstetrics and Gynecology, Georgetown University School of Medicine,
Washington, D.C.
2Correspondence should be directed to Judith Benkendorf, Department of Obstetrics and
Gynecology, Georgetown University School of Medicine, Washington, D.C.
3Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hilt, North
Carolina.
4Division of Genetic Counseling, School of Public Health, University of California at Berkeley,
Berkeley, California (retired).
5Department of Pediatrics, University of Medicine and Dentistry, N.J. Medical School,
Newark, New Jersey.
6Department of Philosophy, Kennedy Institute of Ethics, Georgetown University, Washington,
D.C.
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1059-7700/94/0900~)245507.00/1 1994NationalSocietyof GeneticCounselors,Inc.

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point, of what use will this Code be to genetic counselors in their practice?
Answering these questions requires a brief review of the reasons for creating a code of ethics for the Society, and for choosing the particular structure of this code. Although these issues have already been addressed
(Benkendorf et al., 1992) some major points will assist in illustrating the
impact and usefulness of the new Code.
Moral codes have always been a part of human society. They delineate appropriate and inappropriate behaviors as well as rights and responsibilities, privileges and obligations. Historically, professional societies such
as those found in the business, legal and health care arenas have had their
own codes of ethics outlining distinct rights and responsibilities. With the
USA's present emphasis on providing professional services, and on developing the technology and information needed to deliver these services, the
need to address professional duties and privileges has never been greater.
Creation of a code of ethics to establish guidelines for professional behavior basically involves: (1) discerning the values a profession considers important to its identity, (2) deciding which behaviors erode and which support
these values, and (3) delineating a process for resolving situations which present ambiguities or even conflicts between different values. Many professional
societies have codes of ethics. All these codes recognize the need to promote
justice and fairness at work, as well as doing the best one can for one's client.
In addition, these professional societies are called upon to further the best
interests of their respective professions and the societies within which they
exist. These values and principles are usually considered best served when
the client's autonomy and decisions receive primary attention and respect.
A survey of the codes of selected professional societies (Gorlin, 1990)
can be found in Table I. It is of interest to note that all the health care
groups have codes of ethics, and have some kind of enforcement for their
codes. This situation results in each member of these societies receiving
both moral and legal motivation to act according to the standards set forth
by their codes, especially since legal enforcement often involves licensure
to practice. In contrast to these health care codes of ethics, the NSGC
Code of Ethics does not include legal enforcement or licensing. What accounts for this difference, and how significant is it?
The basic structure of the NSGC Code of Ethics is unique among
health care codes. The four primary relationships which genetic counselors
experience in their work form the basis of the Code. These relationships
are with self, client, colleague, and society. Since relationships are the basis
of the Code, an "ethic of care" perspective was chosen as the most appropriate for formulating the values and goals of the Code. The relevant characteristics of a care ethic are outlined in the explication of the Code of
Ethics (Benkendorf et al., 1992).

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Table I. Codes of Professional Responsibility

Business:

16/17 have ethics committees

11/17 review code violations
5/17 publish, but do not enforce their codes

Legal:

7/10 have ethics committees which develop, review, and revise codes
State Bar Associations regulate enforcement

Health care:

10/10 have ethics committees and enforcement procedures

(enforcement may be through state regulations)

The result of emphasizing relationships and an ethic of care is a code

of ethics which purports ideal standards, and represents the excellence of
service genetic counselors wish to provide to their clients, colleagues, society, and themselves. These standards, then, do not set forth a minimal
level of adequate practice required of every genetic counselor. Hence, the
Code of Ethics is not structured as a legal document for enforcing minimal
standards of practice, and does not use punitive measures for enforcement.
Instead, the emphasis is on education and development as a response to
difficulties encountered in one's practice. The question is how these difficulties will be addressed. The response of the NSGC is that they will be
addressed through clarification and education, rather than accusation and
punishment.
Two dangers immediately become apparent with this type of ideal
ethical code. The first is that the Code could become vacuous and irrelevant. If the ideals of the Code are stated in terms too general or abstract,
then the link between the Code and the genetic counselor's work becomes
too tenuous to be of any practical use. Similarly, the connection between
the Code and the reality of the profession can be lost by raising ideal standards to such heights that the practical applications are lost. The second
danger is of the Code becoming set in concrete and narrowly interpreted.
Though not a minimalist legal code, the Code of Ethics could be used as
if it were, becoming a litmus test for worthiness to be a genetic counselor.
To avoid these dangerous extremes, the Code of Ethics has certain
significant features. The primary purpose of the Code is to explicate, not
to define, the identity of genetic counselors within their several relationships. Such relationships are dynamic and not entirely amenable to being
reduced to specific formulations. The Code therefore has a deliberate lack
of specificity in order to allow for flexibility. Furthermore, an Ethics Subcommittee has been created by the NSGC which has as part of its duties
the continuing interpretation of the Code.

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Ultimately, the best evaluation of the merits of the NSGC Code of

Ethics will come from its use in the everyday life of genetic counselors. To
begin this process, three scenarios are presented to illustrate how the Code
might be applicable to typical situations involving ethical dilemmas in the
counseling situation.

SCENARIO I: CONFIDENTIALITY; INFORMED CONSENT

This case involves carrier testing for fragile X syndrome. The gene
that causes fragile X syndrome (FMR-1) has been recently isolated, and
carrier testing by D N A analysis is available. The probes identify two stages
of the fragile X mutation: the premutation and the full mutation. A person
who carries the premutation of the fragile X gene generally has little or
no clinical expression. The full mutation results in the clinical phenotype,
including learning disability and mental retardation. The transition from
premutation to full mutation occurs only when the mutated gene is transmitted by the mother.
About 20% of males who carry the FMR-1 gene have a premutation
(non-penetrant males). These men will transmit the gene to all their daughters in the premutated form. When the daughters transmit the gene to their
children, however, there is the potential for a change from the premutation
to the full mutation and for clinically affected sons and/or daughters.
Because the gene exists in a premutation form, it is possible that it
can be present in a family for several generations before the first clinically
affected individual with fragile X syndrome is diagnosed. We have observed
families, such as the one illustrated in Fig. 1, in which several distantly
related individuals of the same generation have been diagnosed. In fact,
these families were not aware of the diagnosis in the other relatives until
a family reunion.
It is especially important when working with fragile X families to identify those relatives who are potentially at risk for carrying a premutation
in the fragile X gene, and to offer genetic counseling and carrier testing.
The following is a case of a fragile X family that presented an ethical dilemma to the counselor.

Case Summary
The proband (IV: 1, Fig. 2) was first seen in the genetics clinic in
October, 1990 at the age of 15 months. He had been referred by a developmental specialist who suspected that he had fragile X syndrome. Cyto-

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[]

Fig. 1. Fragile X family. The affected boys (11) are second cousins.

genetic testing revealed that he was fragile X positive (7%). The family
history revealed that he was an only child. His mother (III: 1) had two
brothers, neither of whom had any history of learning problems or mental
retardation. There was no history of retardation in the extended family.
The maternal grandmother (II: 1) was an only child. Fragile X testing was
performed on the proband's mother (III: 1) with inconclusive results (1 cell
in 150 positive for fragile X).
A few years later, the family was made aware of the improvements
in fragile X carrier testing. The maternal grandparents requested testing
by the newly available molecular methods. Molecular analysis revealed that
the grandmother (II: 1) was a premutation carrier and that the grandfather
(II: 2) had a normal male pattern.
Upon learning her test results, the maternal grandmother expressed
an interest in having her parents (I: 1 and I: 2) tested. They were both in
their 80's and in poor health. Since they were under the care of a physician,
she proposed that blood samples be obtained at the time of their regular
blood work. They had not been told of their great-grandson's diagnosis.
She did not wish to share this information with them because she thought
it would upset them. She was very anxious to have the testing performed,
however, because she felt a need to know if she had inherited her fragile
X premutation from her mother or from her father. Upon determining
which parent was a carrier, she planned to alert the appropriate relatives
about the potential genetic risk and the availability of testing.

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I:1

ri
I,1:1

111:4

It1:1

111:2

11:2

111:3

IV:l
Fig. 2. Family presented in Scenario I ( n ) = affected boy; ? =
carrier status unknown).

Case Analysis
Is it ethical to honor the request for testing under these circumstances? We found four arguments in favor of testing:
1.

2.

3.

4.

The test would identify the great-grandparent (GGP) who is a

fragile X carrier. The appropriate relatives could be informed of
their risk and offered counseling and testing.
Telling GGPs about the diagnosis and genetic risks may cause
them emotional distress (anxiety, guilt). Doing the test without
this disclosure would spare them this stress and discomfort.
Since blood samples are obtained from the GGPs routinely for
other reasons, they would not be subjected to any additional
procedures or risks.
Relatives may have the right, in certain circumstances, to make
decisions about genetic testing on behalf of other relatives as long
as they accept responsibility for the decisions.

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Implicit in the first argument is that relatives have a right to know

of their genetic risks. Any individual is a link between generations and a
part of a more extensive family unit. Genetic data may be relevant to all
those belonging to a family. One could argue that since the genetic status
of the GGPs has potentially important implications for many relatives there
is an obligation to perform the test and to disclose the results to the relatives in order to prevent harm (Gevers, 1988). Who is responsible for making certain that the testing and disclosure take place? Is it the obligation
of the parents or grandparents of the affected child? Is it the obligation
of the geneticist to recommend and facilitate the testing? Under what circumstances does this obligation exist? How serious must the genetic condition be in order for this obligation to exist? Who decides? Most of us
would agree that it is the obligation of the geneticist to educate clients
about the potential impact of the client's own genetic status on relatives.
The geneticist should also encourage clients to inform their relatives of a
significant genetic risk. It is less clear, however, if an obligation exists for
a geneticist to actively identify and contact at-risk relatives. There is also
a growing awareness that individuals have a right "not to know," a right
of nondisclosure.
We could also argue that the geneticist has a responsibility for the
allocation of limited counseling and testing resources. The geneticist must
balance the needs of the individual with the needs of society (Fost, 1992).
The request presented to us here (i.e., testing the GGPs first) would allow
for the most efficient use of limited resources.
The main difficulty in the present case is that the request for testing
did not come from the great grandparents themselves but from their daughter who is concerned about protecting them from unnecessary emotional
trauma and distress. One could evoke the principle of beneficence to support argument 2 in favor of testing without the knowledge and consent of
the GGPs. The fourth argument in favor of testing under these circumstances suggests that in certain circumstances an individual may make decisions about genetic testing on behalf of a relative if he/she accepts
responsibility for the decision. One could view this argument from two perspectives of moral reasoning, the justice perspective and the care perspective. From the justice perspective, the issue could be viewed as a conflict
of individual rights, i.e., the rights of the GGPs to autonomy and privacy
versus the rights of the relatives to be informed of the genetic risk. The
obligation of the daughter to protect her parents from harm is also a factor.
From the care perspective the rights and needs of family members could
be viewed as interrelated, thereby presenting less of a moral conflict (Gilligan, 1982).

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There are four arguments against testing:

1.

2.

3.

4.

Testing under these circumstances violates the great-grandparents' fights to autonomy. They are left out of the decision even
though they are mentally competent. The testing is performed
without their informed consent.
Permitting relatives to make decisions about genetic testing for
other mentally competent adults sets a new precedent in genetic
testing. Who will decide under what circumstances this is morally
justified?
Fragile X testing is direct and accurate. Concerned relatives on
either side of the family can request testing. There is, therefore,
no infringement on the fights of relatives to gain knowledge of
their own genetic status.
Testing under these circumstances violates the great-grandparents' right to privacy. Relatives will be informed of the GGPs
genetic status without their knowledge or consent.

The key issues in the arguments against testing involve principles of

autonomy, privacy and confidentiality, i.e., the rights of individuals to have
their confidences kept, their privacy maintained and their wishes respected
in a medical situation. These are important issues in any medical setting,
not only in the genetic counseling situation.
The present case does not involve confidentiality in the strictest sense.
It does involve the great-grandparents' fight to privacy with regard to their
own genetic status. For analysis of the issues, however, it is helpful to consider the principle of confidentiality in medical ethics. Confidentiality is
one of the oldest and most basic principles. Like any other principle, however, it cannot claim absolute dominion over all other principles. Breaching
confidentiality is supported in certain situations to prevent immediate harm
to another individual. Classic examples of this are child abuse, and the
psychiatric client who threatens to kill a specific person. Genetic counseling
situations usually do not involve a level of harm that meets these standards.
The harm that is to be prevented is most often a potential reproductive
risk (Fost, 1992).
The requirement of informed consent in medical situations is based
on the principles of individuality, confidentiality and freedom of choice
(Knoppers and Laberge, 1989). Honoring the family's request to perform
testing without the knowledge and the informed consent of the great-grandparents is a clear violation not only of these rights but of the right to autonomy. Although we could argue that II: l's desire to protect her parents
from emotional distress is an honorable motive for requesting that the test

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be done without their knowledge, we need to be concerned about setting

precedents. Who in the future will decide how to set the limits for situations
in which people, albeit with good motives, will make decisions about the
use of genetic information on behalf of other mentally competent adults?
How do we decide which motives are good enough?
Advances in knowledge and technology have produced new situations
in clinical genetics and genetic counseling. In light of these changes, some
have argued that ethical standards developed within one framework cannot
be presumed to remain appropriate within another. In certain cases the
usually accepted rights of clients to autonomy and confidentiality should
perhaps be reconsidered (Richards and Bowbrow, 1991). Should these
rights be regarded as secondary not only to the need to prevent harm, but
also to the conflicting rights of other people to obtain genetic information?
These are difficult questions. Our code of ethics directs us to enable
clients to make informed independent decisions, free of coercion. The
counselor-client relationship is based on respect for a client's autonomy,
individuality, welfare and freedom. The code also obligates genetic counselors to protect their clients' confidentiality. Genetic counselors are challenged to serve our clients' best interests without compromising these basic
principles.
To honor the request for testing under the given circumstances would
not be consistent with the guidelines presented in our code of ethics and
therefore, would not be recommended. To violate the autonomy, privacy
and freedom of individuals cannot be justified on the basis of these circumstances in light of the Code.

SCENARIO II: PATIENT ADVOCACY

The selection of the present case was inspired by Andrew Faucett's
(1992) letter to the Editor of Perspectives in Genetic Counseling. The case
addresses the issue of the role of the genetic counselor in the identification
of sources of funding for patients who wish to terminate their pregnancies.
This activity appears to be within the purview of the genetic counselor in
many prenatal genetics settings, yet it has received little formal attention
from an ethical perspective.

Case Summary
J.H. is a 34-year-old G4, P2103 African-American woman who was
seen for genetic counseling at 18 weeks gestation because of a low maternal

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serum alpha-fetoprotein (MSAFP) level. She was seen in the Prenatal Substance Abuse Clinic of a large urban, public hospital. Ms. H.'s family history
is significant in that her previous pregnancy resulted in the 28 week delivery
of a male infant with cerebral palsy. At 8 years of age he has incontinence,
cannot talk or feed himself, and uses a wheelchair. Ms. H. believes his
preterm delivery was attributable to cocaine abuse.
Ms. H. began the counseling session by stating she was very tired and
not feeling well. Her eyelids often fell shut during the interview. However,
she was very quick to state that she did not want this baby. She had already
visited clinics to get information about terminating the pregnancy, but was
unable to afford the procedure. She explained that she has a long history
of cocaine abuse and had been in a drug treatment program within the
last year. She had been "clean" for several months, but was recently bingeing on "crack" cocaine in an attempt to miscarry the fetus.
Ms. H. explained that her present pregnancy had occurred due to a
misunderstanding with her partner regarding contraception. At the time of
the visit she had not yet told him of the pregnancy. Ms. H. believed that
the baby's father would harm her if he knew that she was pregnant and
did not keep the baby. He has no other children. She based her fears on
the fact that he has a history of both psychiatric problems and drug abuse.
Because she had become reconciled to the fact that abortion was not an
affordable option, she was now considering requesting placement in an outof-town residential drug treatment facility, without visitation privileges, in
order to complete the pregnancy and put the baby up for adoption.
At this point in the interview, a decision had to be made about how
to proceed. Angry that government regulations had limited Ms. H.'s access
to abortion, the counselor was confused about whether or not to spend
time helping her explore adoption as an option and look into residential
treatment programs for her, or refer her to the social worker and continue
with a discussion of MSAFP and amniocentesis. The latter was how the
counselor proceeded.
Elaborate arrangements were made for Ms. H. to meet with a social
worker, including offering to introduce her that very day. She did not follow
through on these arrangements. She called back several weeks later and
reported that she never saw the social worker, but requested that an amniocentesis be scheduled. She never showed up for the amniocentesis. Since
then she has been lost to follow-up, and has missed her last three scheduled
prenatal visits. In spite of all this, the following ethical dilemma concerning
role boundaries still nagged.
D.R.W., known to the counselor as a possible funding source, has
strong convictions regarding the reproductive rights of women. He contributes generously to Pro-Choice organizations and gives his time to these

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causes, participating in such activities as escorting women safely to Planned

P a r e n t h o o d clinics. H e has often stated that he could be called upon to
give m o n e y to any woman who wants to interrupt her pregnancy and was
without the financial means to do so. Was J.H. the type of woman he
wanted to help? Genetic counselors leave no stone unturned to find families funding for D N A testing or in connecting them with other resources.
Is this situation any different?

Case Analysis
T h e following analysis demonstrates how various guidelines in the
N S G C Code of Ethics can be applied to this case. Some of the guidelines
can even be used to support more than one way for the counselor to behave
while still being true to the ethical convictions of the profession. The case
analysis is broken down into two sections. The first section discusses reasons
the genetic counselor should act as the patient's advocate and assist her
in procuring in funding to terminate her pregnancy. T h e second section
argues that this activity is not within the genetic counselor's role in the
present situation.
T h e r e are several reasons to connect J.H. with D.R.W. to procure a
gift of funding for her pregnancy to be terminated.
T h e Code of Ethics (1-2) states that we have a duty to seek out and
acquire all relevant information. In this case, a possible source of funding
did not have to be sought out. The information was in hand, and therefore
could not be withheld. A resource should be a resource regardless.
Guideline II-2 reminds us to strive to equally serve all clients. In
equally serving all clients, value judgments about how available funding
should be used are inappropriate. Also it should make no difference if the
funding is private or public. W e do not evaluate the merit of the client's
need, as long as it is for a genetics-related service. In the cases discussed
by Faucett (1992), the fetuses had confirmed anomalies. Is a "cocaine baby"
not also at risk for abnormalities?
Guideline II-2 also states that we should strive to respect clients' beliefs, cultural traditions, inclinations, circumstances and feelings. It could
be argued here that respect for J.H.'s decision to end her pregnancy warrants helping her meet this end.
Guideline II-3 refers to enabling clients to make informed independent decisions, free of coercion. J.H. had not only made her decision
freely, she had made it prior to genetic counseling.
Guideline II-4 states that we have a duty to refer clients to other
competent professionals when we are unable to support them. It could be

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argued that a referral for funding is not different from a referral to another
professional or to a support group.
Guideline IV-1 tells genetic counselors to keep abreast of societal
developments that may endanger the physical and psychological health of
individuals. Both the client and the counselor are aware of federal restrictions on access to abortion for women of poverty. In many cases it puts
their well-being at risk. In fact, an unwanted child at this time in her life
may be enough to put Ms. H. "over the edge."
Guideline IV-2 continues on the theme of social responsibility by stating that genetic counselors should strive to participate in activities necessary
to bring about socially responsible change. Taking the role of patient advocate to its extreme, and perhaps even doing it publicly, may impact social
change. What better way to garner public support for clients such as J.H.
than to connect her with D.R.W.'s private source of funding for her abortion and then, with her permission, take the story to the media?
Guideline IV-5 urges genetic counselors to prevent discrimination on
the basis of race, sex, sexual orientation, age, religion, genetic status, or
socioeconomic status. In this case, it might be argued that helping the patient is to overcome discrimination based on socioeconomic status. Reflecting on guidelines IV-2 and IV-5, linking J.H. with D.R.W. in order to
facilitate her procuring an abortion is preventing the birth of an unwanted
"cocaine baby" who will be expensive to society, perhaps throughout its
life. This is assisting in socially responsible change and is in the greatest
interest of the public. J.H. already has her hands full with a disabled child
at home, and "cocaine babies" are difficult to place in adoptive homes.
We now turn to the reasons not to connect J.H. with D.R.W. as a
source of funding for her pregnancy termination.
Guideline I-4 of the Code of Ethics states that genetic counselors
should strive to recognize the limits of their knowledge, expertise and therefore competence, in any given situation. This includes being aware of personal prejudices or convictions that might overshadow objectivity in a
relationship with a client. In this case there is a danger that strong feelings
about Ms. H's right to access to abortion may cause an overstepping of
bounds. It is important to be clear on whether one is acting as a professional or as a private citizen.
Another look at guideline I-4, which refers to respecting the client's
beliefs, cultural traditions, inclinations, circumstances and feelings, reminds
us to also respect the client's rights. Is Ms. H. the only party with rights
in this case, or do the rights of the fetus or its father also need to be
considered?
Guideline II-3 reminds genetic counselors to enable their clients to
make informed independent decisions, free of coercion. Although it was

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established that Ms. H.'s decision to terminate her pregnancy was made
prior to the genetic counseling session, could re-initiating a discussion of
abortion with her, or at least suggesting she reconsider this option in light
of new information, be perceived as directive? Coercive? Is it what the
counselor thinks she should do or what is best for her? Could there be an
accusation of having forced her to have the abortion by not only bringing
it up but by arranging funding for it? Perhaps it could be argued that giving
Ms. H. information about private funding for her abortion is not different
from offering her another option.
Guideline II-5 warns us to maintain as confidential any information
received from clients, unless released by the client. Approaching D.R.W.
on the client's behalf could result in a breach of confidentiality, an inadvertent sharing of private information deemed necessary in order to secure
the funding.
In guideline 11-6, genetic counselors are asked to avoid the exploitation of clients for personal advantage, profit or interest. Is there a risk of
exploiting Ms. H. for personal advantage, interest or profit in this situation?
The gain would be the satisfaction of doing a good deed, and the counteracting of some anger and frustration over restricted access to abortion
in the United States, especially for women of poverty. There may also be
a heightened regard of the counselor by D.R.W., and his satisfaction from
doing a good deed as well.
Section III of the Code of Ethics addresses genetic counselors' relationships with colleagues. Guidelines 111-3 and 111-4 state that we should
recognize the traditions, practices, and areas of competence of other health
professionals and cooperate with them in providing the highest quality of
service. In addition, we should work with colleagues to reach consensus
when issues arise about the responsibilities of various team members, so
that clients receive the best possible care. In light of these guidelines,
should the decision to identify funding for J.H.'s abortion be the counselor's
alone or the entire health care team's? Perhaps an Ethics Committee meeting should be convened. Who does the counselor represent in this case:
oneself, the employer, the profession, the NSGC, society? Is identifying
funding for abortions within the purview of the genetic counselor's role,
or should it be left to social workers?
Finally, the fourth section of the Code of Ethics deals with our relationships with society. It includes taking an interest in, and at times participating in, activities that have the purpose of promoting the well-being
of society. However, social change should not be promoted through individual patients. Social convictions, both personal and professional, as well
as duties to society are not relevant here. The primary obligation is to the
client.

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At first blush, the idea of using a private offer as a source of funding

for Ms. H.'s abortion appears to be a good one. Genetic counselors often
assist patients in procuring funding to carry out or fulfill their wishes and
needs regarding counseling, testing, and access to resources. However, the
decision was made not to actively pursue connecting Ms. H. with D.R.W.
as a source of funding for pregnancy termination for several reasons.
Being drug-dependent makes this patient much less reliable. Her
ability to make decisions at any point in time may be impaired if she is
under the influence of drugs. Drug-dependent patients are also known to
be manipulative. The client could easily be testing her relationship with
the genetic counselor to see just how far she would go on her behalf. It
is not unusual for a drug-dependent individual to have lowered self-esteem
and few expectations from interpersonal relationships. In the 1990 Ethics
Subcommittee's workshop it was concluded that drug-dependent patients
have compromised their autonomy because their competence in decisionmaking is often impaired. Any such referral for this client would have to
be done carefully, and as part of a trusting relationship built over time.
How much of her story is really believable after just one visit?
Even more importantly, there is presently no legal, ethical or just system in place for connecting clients with private sources of funding for abortions. Can one do for one client that which cannot be done equally for
all? It has been suggested that such monies be donated to a central fund
which can be accessed by the responsible professionals while protecting the
confidentiality of all parties involved. In the present case, there were some
concerns about the counselor's safety. If Ms. H. felt her life would be in
danger should her partner discover she has terminated the pregnancy, how
would he react to learning of the counselor's part in it? Having a team of
professionals responsible for the decision to access money from a central
fund could also diffuse the responsibility.
This case raises some important issues concerning the interface between the genetic counselor's role and the impact of personal convictions.
It is human nature to want to follow one's conscience. However, professionals must understand, at all times, that what one might do as a private
citizen may not always be appropriate within one's professional role.

SCENARIO IIh SEXUAL HARASSMENT

Since Anita Hill's testimony the media have been full of articles about
sexual harassment and sexual discrimination. The navy, the air force, academic institutions and various work places have been named for incidents
of sexual harassment.

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What is sexual harassment? The definition adopted by the Equal Employment Opportunity Commission in 1980 (Paludi and Baruckman, 1991)
includes any unwelcome sexual conduct which is either (a) made a term
or condition of employment, or (b) has the purpose or effect of unreasonably interfering with an individual's work performance or creating an intimidating, hostile, or offensive work environment. The definition includes
five levels of sexual harassment:
(1) Gender harassment: generalized sexist statements and behavior
that convey insulting, degrading and/or sexist attitudes,
(2) Seductive behavior: unwanted, inappropriate, and offensive
physical or verbal sexual advances,
(3) Sexual bribery: solicitation of sexual activity or other sexual
behavior by promise of reward,
(4) Sexual coercion: coercion of sexual activity or behavior by threat
of punishment, and
(5) Sexual assault: assault and/or rape.
What is the incidence of sexual harassment? There have been several
studies done. Almost all have shown that women are usually the ones who
are sexually harassed. In 1980 the first comprehensive national survey was
initiated by the U.S. Merit Systems Protection Board. Usable data were
obtained from 83% of the sample. The sample contained 10,644 women,
42% of whom reported overt sexual harassment. In 1981 B. Gutek did a
large survey of a representative sample of private sector workers in the
L.A. area. She reports that 53.1% of the women reported sexual harassment during their working experience. Most of the studies show that gender
harassment and seductive behavior are the most common forms of sexual
harassment (Paludi and Baruckman, 1991). An interesting breakdown of
who does the harassing was found in a study done by the Working Women
United Institute in 1975 (MacKinnon, 1979). Of a sample of 155 employed
women, ages 19-61 years, 40% were harassed by a male superior, 22% by
a coworker, 29% by a client, customer or person who had no direct working
relationship, 1% by a subordinate, and 8% by "others."
The consequences of sexual harassment are many. For the individual
there may be physical, emotional and vocational effects. The physical effects reported are headaches, insomnia, gastrointestinal distress, for example. E m o t i o n a l effects include depression, helplessness, decreased
motivation, anxiety and guilt. Vocational effects are loss or change of jobs,
unsatisfactory work performance, increased absences from work, decreased
satisfaction with the job, etc. For the institution and society it causes more
personnel changes, increased personnel dissatisfaction and therefore, de-

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B e n k e n d o r f et al.

creased job performance and changes in careers that may have been very
successful, fulfilling and contributing to the social good.
What can be done about sexual harassment? Most harassers do not
identify their behavior as harassment. An individual can try to talk with
the harasser, indicating the wish that it cease, or write a letter stating what
occurred, his/her individual reactions, and the goals for ending the situation. If this does not work then it is necessary to take institutional action.
Institutions (whether business, academic or government) should have
clear and effective procedures for reporting and investigating charges of
harassment. These procedures should include:
(a) educational material available to all personnel,
(b) informal and non-threatening contexts in which to discuss
incidents of harassment (particularly important for giving the
individuals concerned the opportunity to examine the complaint
without fear of consequences),
(c) formal p r o c e d u r e s which include a hearing panel that is
independent of the institutional hierarchy.
How does all this relate to the NSGC Code of Ethics? Guideline I-5
states that "genetic counselors strive to be responsible for their own physical and emotional health as it impacts on their professional performance."
It is reported that women who have been harassed typically change their
job assignments, and/or major career goals rather than deal with the fact
of the harassment directly. To make these changes may help the immediate
and emotional effects of the harassment, but there are undoubtedly long
term effects. It also gives power to the harasser, who can continue with
the same behavior toward others.
Guideline 111-2 states the "genetic counselors strive to encourage ethical behavior of colleagues." It is extremely difficult to confront a colleague
about his/her behavior, but is it ethical to allow the behavior to continue,
and to bring harm to others as well as oneself, and to make the workplace
an uncomfortable place to be?
"Genetic counselors strive to keep abreast of societal developments
that may endanger the physical and psychological health of individuals"
(guideline IV-l) and "genetic counselors strive to participate in activities
to bring about socially responsible change" (guideline IV-2). If sexual harassment becomes an issue either for oneself or for another person in the
work place, efforts should be made to provide and establish educational
materials for all personnel. Work toward the establishment of clear and
effective procedures for reporting and investigating charges of harassment
should be a goal. But then, who has time to do all of this? Our individual

Code of Ethics: Day-to-Day Applications

261

jobs are all so time consuming, and take so much psychic energy and
strength. An answer is offered by Paludi and Baruckman (1991) in their
book Academic and Workplace Sexual Harassment: "The most common
forms of harassment are unrecognized by most members of an academic
or working community. Any effort that any of us makes to disclose what
is still, unfortunately, a hidden issue, creates an empowering learning and
working atmosphere for us all. Sexual harassment is an issue for all of us
who care about our communities."

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