Code of ethics: Day-to-day applications

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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246 Benkendorf et al.

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 deline- ate 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 devel- oping 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 ac- counts 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 char- acteristics of a care ethic are outlined in the explication of the Code of Ethics (Benkendorf et al., 1992).


Table I. Codes of Professional Responsibility

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Business:

Legal:

Health care:

16/17 have ethics committees 11/17 review code violations 5/17 publish, but do not enforce their codes

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

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 irrele- vant. 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 Sub- committee has been created by the NSGC which has as part of its duties the continuing interpretation of the Code.


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 DNA 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 trans- mitted 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 devel- opmental 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.


111:4

I:1

r i I,1:1 i 11:2

It1:1 111:2 111:3

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. 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.

2. 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.

3. Since blood samples are obtained from the GGPs routinely for other reasons, they would not be subjected to any additional procedures or risks.

4. 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.

Code of Ethics: Day-to-Day Applications 251

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 (Gil- ligan, 1982).


There are four arguments against testing:

1. 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.

2. 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?

3. 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.

4. 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 con- sider 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


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 chal- lenged 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


serum alpha-fetoprotein (MSAFP) level. She was seen in the Prenatal Sub- stance 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 binge- ing 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 out- of-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 contrib- utes generously to Pro-Choice organizations and gives his time to these


causes, participating in such activities as escorting women safely to Planned Parenthood clinics. He has often stated that he could be called upon to give money 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

The following analysis demonstrates how various guidelines in the NSGC 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. The second section argues that this activity is not within the genetic counselor's role in the present situation.

There are several reasons to connect J.H. with D.R.W. to procure a gift of funding for her pregnancy to be terminated.

The 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. We 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 war- rants helping her meet this end.

Guidel ine 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


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 restric- tions 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. Reflect- ing 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


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 inad- vertent sharing of private information deemed necessary in order to secure the funding.

In guideline 11-6, genetic counselors are asked to avoid the exploita- tion 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 coun- teracting 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 meet- ing 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.


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 decision- making 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 sys- tem 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.


What is sexual harassment? The definition adopted by the Equal Em- ployment 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 unreason- ably interfering with an individual's work performance or creating an in- timidating, 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 exam- ple. Emot ional 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-


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 rocedures 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


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."

REFERENCES

Benkendorf JL, Callanan NP, Grobstein R, Schmerler S and FitzGerald KT (1992) An explication of the National Society of Genetic Counselors Code of Ethics. J Genet Counsel 1(1): 31-39.

Faucett A (1992) Letter to the Editor. Perspect Genet Counsel 14(3):11. Fost N (1992) Ethical issues in genetics. Pediat Clin North Am 39(1):79-89. Gevers JKM (1988) Genetic testing: The legal position of relatives of test subjects. Med Law

7:161-166. Gilligan C (1982) In a Different Voice. Cambridge: Harvard University Press. Gorlin R (ed) (1990) Codes of Professional Responsibility (2nd Ed.) Washington, DC: BNA

Books. Knoppers BM, Laberger C (1989) DNA sampling and informed consent. Can Med Assoc J

140:1023-1028. MacKinnon CA (1979) Sexual Harassment of Working Women. Connecticut: Yale University

Press. Paludi MA, Baruckman RB (1991) Academic and Workplace Sexual Harassment. New York:

SUNY Press. Richards JR, Bowbrow M (1991) Ethical Issues in Clinical Genetics: A report of a joint

working party of the College Committee on Ethical Issues in Medicine and the College Committee on Clinical Genetics. J R Coil Phys Lond 25(4):284-288.

Documents

Code of ethics: Day-to-day applications