Genetic Medicine and the Conflict of Moral Principles.
Fam Syst & Health 17:63-74, 1999
Within the past decade a dramatic transformation has occurred in the field of genetic medicine. For decades, genetics was primarily a medical specialty focusing on rare inherited disorders that affect only a small number of people. Today, with the discovery of genetic mutations that can predispose to many forms of cancer, cardiac disease, Alzheimer's, and other neurodegenerative diseases, and to possible psychiatric or behavioral disorders like depression or alcoholism, all of us are potentially involved in genetic medicine.
Accompanying this transformation in medical knowledge is a change in moral thinking. Genetics is forcing us to reconsider the emphasis on patient-centered autonomy that has been the dominant model of ethical responsibility in medical decision making (National Commission, 1979; Childress, 1990; Childress & Fletcher, 1994). Underlying this model is the idea that the competent, adult patient has the right to consent to or refuse medical treatments or participation in medical research. Patients must understand the nature of the care they are being offered--the requirement of informed consent. Once we determine that the patient is a competent adult who has been fully informed of the consequences of his or her decision, the patient may refuse treatment, even when others, including the doctor or other health professionals, think that treatment is in the patient's best interests. This model also privileges the physician-patient relationship. The physician is a fiduciary, or trust holder for the patient and must act to promote the patient's interests. This includes the duty to protect the privacy and confidentiality of the patient's medical records and communications with the physician.
This dominant patient-centered autonomy model is certainly valuable. It has taken us several decades to establish it firmly. As recently as 20 years ago, it was the received opinion that patient consent is not important because "the doctor knows best." Physicians routinely made critical care decisions for adult patients. They commonly withheld or misrepresented information when they judged that patients could not understand or deal with it. Researchers also frequently subordinated the individual subject's welfare to the benefits gathered from research. In some cases, as in the Tuskegee syphilis experiment or the extended government radiological experiments, this way of thinking reached terrible proportions (Jones, 1993; Advisory Committee on Human Radiation Experiments, 1995). But as any member of an Investigational Review Board will attest, there is a persistent tendency on the part of researchers to overestimate the value of their work and to try to avoid the inconvenience and delay created by the requirement of full and informed consent. For all these reasons, the autonomy model is a major achievement in bioethics that we compromise or qualify at our peril.
Despite this, developments in genetic medicine and research are inevitably bringing this patient-centered model under review. The main reason for this is that genes transcend individuals. Although genes are found within the cells of each person, in many cases they also are shared with other members of one's family or one's ethnic group. As one writer observes, "By definition, human genetics pertains to relatedness, rather than separateness" (Mullen 1995, 55). Consequently, the efforts that you or I make to obtain, use, or refuse genetic information about ourselves can alter the lives of others in our families or communities who share those genes (Suter, 1993). Our individual decisions can have profound psychological effects on them, shaping their attitude toward their future. It can force them, without their consent, to live as the "asymptomatic ill" under a threat of impending illness they can do little to prevent (Nelkin, 1992; Siebert, 1995). Genetic information can also lead to stigmatization and discrimination by insurers and employers (Greely, 1992; Geller, 1996; Lapham, Kozma, & Weiss, 1996).
The familial and communal nature of genetic information means that other ethical principles besides respect for the patient's autonomy assume new importance in this context. In addition to autonomy, two other principles have been important in bioethical decision making (National Commission, 1979). One is really a pair of principles: beneficence, which requires us to promote the welfare of other persons, and nonmaleficence, which requires us to minimize harm. A further principle is justice, which requires the fair apportioning of the benefits and harms of research or clinical care as well as efforts to combat discrimination and prejudice. The familial and communal nature of genetic information makes decision making more complex by displacing the single-minded emphasis on autonomy with a triad of principles that can sometimes be in tension with one another (See figure 1).
[Figure 1 ILLUSTRATION OMITTED]
This challenge to the dominant autonomy model is particularly acute for genetic professionals (medical geneticists and genetic counselors), whose respect for patient autonomy is enshrined in their deep commitment to non-directiveness in counseling. As summarized by Arthur Caplan, the hallmarks of this stance include "(1) a willingness to provide testing and counseling to all who voluntarily seek it, (2) the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, (3) the fair and balanced presentation of all options for action if a problem is discovered, (4) a willingness to answer all questions asked by those seeking services, and (5) an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits" (Caplan, 1992: 131).
It is easy to document the depth of this commitment to value neutrality, nondirectiveness in counseling, and respect for patient autonomy among genetic professionals. For example, the Code of Ethics of the National Society of Genetics Counselors, states that "The counselor-client relationship is based on values of care and respect for the client's autonomy, individuality, welfare, and freedom. The primary concern of genetic counselors is the interests of their clients" (NSGC, 1993:170). Studies of genetics professionals' decision making indicate that this primacy of autonomy is taken seriously. In one international survey involving medical geneticists from 18 countries, 14 clinical cases involving conflicts between counselees, family members, or the needs of society were posed. In responding to these cases, geneticists cited the principle of autonomy as the first or second reason for their answers 59% of the time. The consideration cited next most often, the principle of nonmaleficence ("not harming"), was cited only 20% of the time. The principle of beneficence (doing good to others or society) ran a distant third at 11%, while the principle of justice was appealed to in only 5% of the responses (Wertz & Fletcher, 1989d).
This commitment to non-directiveness has several distinct sources. One is the history of the eugenics movement in this country and abroad. The terrible abuses to which eugenics led were often justified in the name of a social good larger than individual rights. Recoiling from this, genetic professionals have tended to place the interests of the counselee, patient, or couple seeking assistance before all other considerations (Caplan, 1993). Another factor is our culture's abortion debates. Genetic professionals have been wary of being identified with a pro- or anti-abortion stance. By adopting a neutral position on reasons for abortion and respecting the decisions of parents to continue or terminate a pregnancy when genetic problems are identified, they have tried to insulate their work from these controversies.
Despite its ethical and professional importance, however, patient autonomy cannot be preserved by ignoring the challenges that developments in genetic medicine are posing from the side of beneficence/nonmaleficence and justice. In what follows I offer several representative cases, some hypothetical, some that have actually occurred, to illustrate the complex ways that these three principles are coming into conflict. I do not propose to offer a solution to these conflicts. Instead, I want to suggest that the principle of respect for autonomy, though clearly of great importance, will have to be rethought in relation to these competing ethical principles.
AUTONOMY VERSUS BENEFICENCE/ NONMALEFICENCE
The conflict between patient autonomy and beneficence/nonmaleficence (See Figure 2) is not unique to genetic medicine. It arises whenever the needs of the presenting patient (including the patient's right of privacy) are in tension with the caregiver's obligations to other persons or to society at large. This frequently occurs in the area of contagious diseases and, most recently, has arisen in connection with the question of whether physicians should be required to report the positive HIV status of sexually active individuals or women who are pregnant (Jos, Marshall, & Perlmutter, 1995; Cohen, 1995; Macklin, 1995). The familial nature of genetic information makes this conflict of principles a recurrent issue for genetic professionals, as the following case reveals.
[Figure 2 ILLUSTRATION OMITTED]
Case 1: Fragile X
Ryan, age 4, is brought to the medical genetics clinic by his 27 year old mother, Janet, for evaluation of developmental delay and hyperactivity. He has undergone a lot of tests and results are all normal. She and her husband, Terry, very much want another child.
The family history is unremarkable with the exception of a six year old son of one of Janet's cousins who is apparently `slow.' Janet reports her family does not get along and she has had little contact with her mother's side of the family. Her parents are both deceased. A friend told her recently that her 25 year old sister just found out she is pregnant with her first child.
It is determined that the cause of Ryan's delay is Fragile X syndrome. As its name suggests, this condition is a sex-linked disorder that is carried by females and most seriously affects males, in whom it can cause severe mental retardation. After discussing the genetics of Fragile X syndrome and risks to other family members, the medical geneticist asked Janet to notify her sister of the risks to her child and alert her to the availability of prenatal testing. The following week the geneticist calls Janet. In the course of the conversation, Janet states that she has not called her sister and does not intend to.
This case obviously raises a number of questions. Are there ways that the geneticist can persuade Janet of her responsibility to inform her sister? Failing that, are their other ways of alerting Janet's sister to her risk without compromising the physician's duty to preserve the confidentiality of the relationship with Janet? If there is no other recourse, does the medical geneticist have an ethical or legal right to breach confidentiality and inform Janet's sister--and perhaps others in the family--of the genetic risk? Does the professional have a duty to do so? What, in general, is the extent of the genetic professional's "duty to warn"? The President's Commission for the Study of Ethical Problems in Medicine (1983:44) recommended that "a professional's ethical duty of confidentiality to an immediate patient or client can be overridden only if several conditions are satisfied: (1) reasonable efforts to elicit voluntary consent to disclosure have failed; (2) there is a high probability both that harm will occur if information is withheld and that the disclosed information will actually be used to avert harm; (3) the harm that identifiable individuals would suffer would be serious; and (4) appropriate precautions are taken to ensure that only the genetic information needed for diagnosis and/or treatment of the disease in question is disclosed." What has not yet been clearly resolved through the legal process, however, is the question of which genetic risks are among the "serious harms" that might either permit or require breaching confidentiality in medical contexts (Pelias, 1991; Kapp, 1994; Andrews, 1991; 1996; Suter, 1993).
Some might argue that all these questions miss the point: the familiar duties of doctor and patient do not apply in this case because, where genes are concerned, the patient is not the individual who presents to the physician but the entire family to which that individual belongs. Thus, the physician must not do merely what Janet wants, but what best meets the needs of all family members. This is a radical solution, however, that takes medical practice out into uncharted territory and imposes serious new burdens on medical professionals. That this solution can even be proposed shows how the familial nature of genetic information is challenging some of the prevailing ethical assumptions of medical practice.
In this case the tension between autonomy and beneficence or nonmaleficence is caused by a patient who refuses to fulfill her ethical obligations to other family members who might benefit from prenatal testing (which might help them decide to continue or terminate a pregnancy or prepare for the birth of a child with a genetic disorder). But the same tension can arise in many other ways where genetic medicine or research is concerned. In some conditions, testing is aimed at determining whether an individual or family have a genetic susceptibility to a disease, the knowledge of which can help them pursue preventative strategies. Current testing for known breast cancer mutations is an example. In such cases, whenever the specific genes involved have not yet been identified, researchers or clinicians must conduct extensive family linkage studies to determine the pattern of inheritance. One or more family members can block progress by refusing to participate in the study. The principle of respect for autonomy certainly supports such refusals, but should this principle trump research that is needed to improve the health of other family members? Sometimes, the reverse problem arises: family members demand participation by other relatives in ways that exert pressure on them (Parker, 1994). In special cases, as well, one person's use of a genetic test can harm others in the family. This problem has arisen in connection with Huntington's Disease, a fatal, later onset neurological disorder, for which no treatment exists. There have been instances when one twin of identical twins has insisted on testing and the other twin, unwilling to know the future and be subjected to the fearful psychosocial harms that testing can bring, has objected (Heimler & Zanko, 1995). In such instances, not only is respect for autonomy in tension with beneficence and nonmaleficence, but we actually have a conflict of two individual expressions of autonomy.
Social workers, psychologists, genetic counselors, and others who work closely with families know that disputes like these often reveal deep fault lines and sources of conflict within a family. When faced with these cases, they also recognize that it is not just a matter of solving an ethical problem, but of understanding and addressing the underlying problems that give rise to such conflicts (Green & Thomas, 1997). This should be born in mind by all who work with families when genetic information becomes a subject of dispute. The familial nature of genetic information will undoubtedly increase the number and intensity of conflicts that come before caregivers or counseling professionals.
AUTONOMY VERSUS JUSTICE
Because of their focus on the needs and interests of the patient, genetic professionals have not had much contact in their work with larger issues of social justice. Two things are changing this: the increasing power of genetic medicine to test for a range of genetic conditions and the increasing sensitivity of groups and communities to the bearing such testing has on them. The next case illustrates how an area of seemingly very private decision making can raise larger questions of social justice.
Case 2: Sex Selection
A couple visit a genetic counselor requesting prenatal diagnosis for purposes of selecting the sex of the child. They already have four girls and are desperate for a boy. They tell the counselor that if the fetus is a girl, they will abort it and will keep trying until they conceive a boy. They also say that if the counselor refuses to do prenatal diagnosis for sex selection, they will abort the fetus rather than risk having another girl. The clinic for which the counselor works has no regulations prohibiting use of prenatal diagnosis for sex selection.
The issue of prenatal sex selection for non-disease conditions (where no X-linked disorder is involved) has been the center of controversy both in this country and abroad. The practice is currently widespread both in India and China, where critics contend that it threatens major social dislocations by leading to a significantly unequal proportion of male and female births (Patel, 1989; Wertz & Fletcher, 1989a). But even where it is less prevalent and used only for family balancing, as in this case, some maintain that the practice both reflects and reinforces discriminatory attitudes towards women (Bayles, 1984; Warren, 1985; Wertz & Fletcher, 1989c).
Genetic professionals in the United States have been reluctant to reject requests like this one. One poll of U.S. geneticists indicated that 32% of those questioned would assent to the parents' request. Another 28% would not provide the service themselves but would feel obligated to refer the couple to a counselor who would (Wertz &Fletcher, 1989b). This illustrates once again how important the principle of respect for patient autonomy has been in the thinking of genetic professionals.
In the future, this tension between justice and autonomy (See Figure 3) in genetic medicine will undoubtedly increase. More sensitive, earlier, and less invasive means of prenatal testing, including testing for fetal sex, are in the works (Reubinoff and Schenker, 1996). Genetic research also promises to enhance our understanding of other genetic conditions whose discovery will raise justice issues. One example is sexual orientation. Within the past few years, research by Hamer and others (Hamer & Copeland, 1994; Hu, Pattatucci, Patterson, et al., 1995) has suggested a possible genetic component in male homosexuality. Although initially applauded by many in the gay community who were pleased with this support for their view that sexual orientation is not chosen but shaped by biology, this research has recently drawn criticism from some gay activists and others (Shoofs, 1997; Schuklenk, Stein, Kerin, & Byne, 1997; Murphy, 1995). They argue that it may open the way to widespread decisions by parents to avoid the birth of a gay child, reinforcing prejudicial attitudes and, possibly, threatening the very existence of the gay community.
[Figure 3 ILLUSTRATION OMITTED]
Justice issues also arise in the conduct of genetic research. Many genetic diseases are more common in minority ethnic groups. For example, sickle cell disease is associated with persons of African descent, Tay-Sachs with persons of Ashkenazic Jewish heritage, and Mediterranean fever with Armenians (Duster, 1990). Identifying the genetic basis of a disorder widely shared within an ethnic community can place all members of that community at risk for stigmatization or discrimination. This issue has already emerged in research on cancer genetics in the Jewish community. Although this research was initially greeted with applause because of its life saving potential, the identification of gene mutation after gene mutation in this relatively small community, has recently raised questions about heightened discrimination (Rothenberg, 1997). Will this lead to a situation where, merely by being a member of this group, one is exposed to negative judgments by employers, insurers, or prospective marriage partners? Behavioral genetic research on alcoholism in Native American communities raises similar questions. Although individuals or families can benefit from such research by learning of their immediate risks, the finding that many members of a particular group have a heightened genetic propensity to a behavioral disorder can serve to reinforce existing stereotypes and prejudices. Individual benefit may thus be won at the price of group harm. Faced with these challenges and criticisms, genetic professionals will either have to temper their commitment to autonomy and nondirective counseling, or make a much better case, to themselves and others, as to why the single principle of respect for autonomy deserves the pride of place it has been given. Some believe that we must also expand our concept of informed consent in research beyond the individual to include representatives of the ethnic groups or communities to which individuals belong (Indian Health Services, 1996).
To this point we have looked at tensions between single poles of our triad of principles (Cases 1 and 2; Figures 2 and 3). But it is important to see that multiple tensions as well as reinforcing pressures can develop between these principles. The following case, an actual occurrence (Wasmuth 1995), illustrates the way in which a commitment to patient autonomy and justice can work together to conflict with the principle of nonmaleficence.
Case 3: Achondroplasia
Achondroplasia, is an inherited autosomal dominant condition that causes diminished growth in the long bones of the legs, leading to dwarfism. Several years ago, the gene for achondroplasia was identified and cloned. If two people with achondroplasia marry, each of whom is heterozygous (has only one of two possible copies for the gene), chances are that two of every four children they have will be also be heterozygous and will be short-statured. On average, one child in four born to the couple will not inherit the achondroplasia gene and will be of average height. And one child in four will be homozygous for the gene. This condition is lethal and the child usually dies in infancy after a tragic downward course.
A researcher who helped identify the gene understandably felt that he had made a significant contribution by allowing short-statured parents the option of aborting fetuses with the lethal double dose of the gene. Shortly after news of the discovery was published, he received a call was from one member of a couple each of whom is affected by achondroplasia. The caller asked whether it was possible to test for both the presence and absence of the gene. The couple wanted this information, they said, because they planned to abort not just all fetuses homozygous for the achondroplasia gene, but any unaffected ones as well. They were intent on having only short-statured children like themselves.
As indicated by Figure 4, this case poses at least two major value conflicts for genetic professionals. First, there is the tension between respect for parental autonomy, which would ordinarily encourage acceding to the parents' request for assistance and information, and the medical professional's desire not to visit harm on a child. Children born with achondroplasia frequently must undergo a series of surgical procedures in order to correct more serious bone problems. Throughout life, they also face many obstacles because of their short stature. Can it be ethical to deliberately bring a child into being with this condition? Is it right to assist such efforts? How do we balance respect for parental autonomy against nonmaleficence?
[Figure 4 ILLUSTRATION OMITTED]
Matters become more complex when we realize that some individuals with achondroplasia or other disabilities reject the idea that any harm is being done by the parents in this case. They maintain that the bulk of the problems they face are socially constructed and reflect society's marginalization and neglect of those who are different (Sawisch, 1988; Lippman, 1991; Kaplan, 1993; Asch, 1994; Saxton, 1996). Some also reject medical or genetic "solutions" to their problems. The proper response, they believe, is not to prevent the birth of a child with a genetic condition but to eliminate the social handicaps and discriminatory attitudes that make such births undesirable. Prenatal testing, in general, has been an object of criticism by some disabilities activists who feel that it sends a negative message about the quality and "worth" of their lives or who feel an obligation to resist interventions that would reduce the size and power of their community (Wertz, 1992). Thus, the parents in this case may be driven not merely by their personal wishes but also by a commitment to social justice.
Responding to these issues will not be easy. It will require an appreciation of the sensitivities involved here and well-founded judgments about the appropriate uses of medical care, including genetic services. It will be important for the healing professions to develop a clearer idea of what constitutes a "disease," "disorder," or "disability," since this is what medicine has traditionally addressed (Culver, 1996). Nondirective genetic counseling has assumed that people seek information in order to prevent genetic disease. What this case reveals is that genetics is opening up the possibility of shaping our lives and our children's lives in ways that go far beyond what is normally associated with the healing role. Somewhat less dramatic, but perhaps more worrisome in the longer term, is the fact that the identification of the genetic basis of many traits that are not diseases (e.g. height, intelligence, temperament) will offer parents a new range of choices. Unless genetic professionals and others who work with them are able to develop a clearer understanding of the ethical boundaries to their work, they will find themselves pulled by considerations of justice and parental autonomy into doing things far from their original intent as members of the health professions.
Respect for patient autonomy, including maintenance of a fiduciary relationship to the patient and preservation of the patient's privacy, has been a cornerstone of ethical medicine. These cases illustrate that the familial and social nature of genetic information will make adhering to respect for autonomy more difficult in the future. Should respect for autonomy be abandoned? Should we recognize, perhaps, that the family (or ethnic group) is the "patient" in genetic medicine whose interests deserve as much attention as the presenting individual?
It would be unfortunate if caregivers and their professions were to draw this conclusion. Respect for patient autonomy still provides the soundest foundation for care. It is central to the trust that brings patients (or families) into the medical and counseling system in the first place. If individuals know that their needs and privacy are routinely subordinated to larger social or familial purposes, many will avoid seeking assistance in the first place, negating any benefit that their genetic information might have produced.
Nevertheless, genetic professionals and other caregivers dealing with genetic information will have to be alert to these growing ethical conflicts. They will have to understand the familial impacts of genetic information and the ways in which disputes over this information may reflect or intensify other, deeper tensions in patients' families or ethnic communities. They will have to be sensitive to the emerging justice issues that loom beyond individual requests for assistance. They will have to develop a clear understanding of the nature and limits of medical interventions, including a defensible understanding of what does (or does not) constitute a genetic disease. And they will have to work together within their professional organizations to establish fair boundaries to their services. Without a professional standard of care to appeal to, caregivers will find themselves isolated and perhaps even legally vulnerable as they respond to the range of requests that individuals or families can make. The emerging era of genetic medicine holds out the promise of dramatic new approaches to disease. To fulfill this promise, healthcare professionals will have to plan for the ethical questions occasioned by the social nature of genes.
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RONALD M. GREEN, Director, Ethics Institute, Dartmouth College, 6031 Parker House, Hanover, New Hampshire 03755. (603) 646-1263 (phone). (603) 646-2652 (fax). E-mail: firstname.lastname@example.org.
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|Author:||GREEN, RONALD M.|
|Publication:||Families, Systems & Health|
|Date:||Mar 22, 1999|
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