Gender Justice in Genetics Mary B. Mahowald,
Department of Obstetrics and Gynecology MacLean Center for Clinical Medical Ethics University of Chicago Chicago, Illinois
he focus of this issue of Women’s Health Issues is on women. We have attempted to identify aspects of the new genetics that particularly affect the majority of the human community who are phenotypically female and to examine whether the impact of the Human Genome Project (HGP) on them is likely to promote justice in general and gender justice in particular.
The term justice is often used interchangeably with the terms “fairness,” “equality,” and “equity.” But what does it mean to treat men and women equally or even to treat all women equally? To answer that question, consider the concept of equity found in Aristotle. Equity refers to a situation in which like but different individuals or groups are regarded and treated justly because they are equally valued. The relationship between equity and equality is thus defined by the concept of “equal value.” Equity deals with different individuals that are equally valued. Conversely, inequity refers to a situation in which like but different individuals or groups are regarded and treated unjustly because they are not equally valued. To clarify the relationship further, consider how equal value is expressed mathematically. Think, for example, of arithmetical or algebraic equations, such as (2 + 3 = 5) and (x = y). We may think of these symbol sets as applicable to the relationship between men and women: two men and three women equal five human beings, and one woman (x) equals one man (y), or, to be chromosomally accurate, XX = XY. In the first equation, we do not mean that two men and three women are precisely the same as (any) five human beings, and, in the second equation we do not mean that a man is the same as a woman. In other words, the equality sign does not connote identity. Equality, therefore, is not sameness. The same rationale is applicable to human beings with chromosomal arrangements such as X0, XYY, and XXX. Each equally represents a human being, even though each is chromosomally distinctive. The moral significance is one of equal value without connoting that the entities compared are the same. Gender justice, then, refers to a situation in which X represents women, and Y stands for men, and X = Y. Men and women are equal to each other because they are equally valued but not the same. Because of unchangeable
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biologic differences, women have some burdens and risks that men do not have regarding reproduction and genetics, and those burdens and risks are not equal. However, measures can be introduced to reduce this inequality; so long as reasonable efforts are made in this direction, the requirements of gender justice may be met. This is analogous to other ways by which society tries to reduce inequities that occur because of the differences with which individuals are born. In short, a societal obligation to reduce the disparities between groups of people who are equally valued calls for reasonable efforts to reach a state in which X = Y, or XX = XY = X0 = XYY = XXX. Consider the fact that women have to undergo risk and discomfort in prenatal genetic tests and interventions for genetic conditions for which their male partners are as responsible as they are. This may be considered a natural but inevitable or unchangeable inequity. Because it is in women’s bodies that fetuses and embryos develop, it is in their bodies that the tests must be performed. Still, the fact that women as patients are billed for these procedures suggests a means of balancing or at least reducing this inequity. Some women are covered for genetic tests and prenatal interventions through the health insurance of their husbands. Where that does not occur, the men who impregnated the women involved could be held responsible to cover the expenses or to contribute to coverage. It hardly seems fair not only to expose women to the greater risk but also to impose on them alone the financial burden of testing and intervention when the financial burden can be reduced by requiring men to contribute. When differences between men and women are complementary and distinct ways of connoting the same value, there is gender equality. Formulaically, this may be expressed as follows: advantages of XX 1 advantages of XY = When the differences lead to one gender advantage than the other, there is inequality:
advantages of XX $1 advantages of XY Gender justice, thus, requires identification of gender differences, determination of whether they entail inequality, and efforts to eliminate or ameliorate inequalities that inevitably occur. All of the differences added together equal one or as close as possible an approximation to one. Identifying gender differences implies that the contemporary tendency to speak, think, and write in gender-neutral language is misguided. It is not inappropriate when applied to the many ways in which the responsibilities of parenting and caregiving can and ought to be shared equally by men and women. But gender-neutral language is a mistake when it masks the fact that real differences result in real inequities or disadvantages of one sex vis-a-vis the other. It simply is not true, for example, that couples undergo procedures, such as amniocentesis or termination of pregnancy, after positive diagnosis of a genetic condition. Neither is it true that dishmforts and risks of gamete donation or gestation fall equally on both partners. Gender differences are socially triggered and sustained through the predominance of women, both in the home and in institutions, as primary caregivers of those affected by genetic conditions. This predominance is likely to continue to cause disparate impact on men and women until and unless concrete measures are introduced to change the imbalance. Because this is not an unchangeable circumstance, however, the inequity with which it is associated could be ameliorated through improved systems of support and remu-
neration and by rewarding informal than we generally do. Those who are of the burdens induced by the need obliged to reduce the disadvantages reduction in their own advantages.
caregiving responsibilities much more advantaged by others shouldering most to provide caregiving may be ethically of the caregivers, even if this involves a
Gender justice or injustice in genetics may be illustrated more concretely by examining gender-specific issues that occur in the context of two diseases that affect many families: cystic fibrosis and sickle cell anemia. Cystic fibrosis is the most common autosomal recessive disease affecting European Caucasians, of whom one in 25 are carriers of the gene. Sickle cell disease is the most common autosomal recessive disorder in African-Americans, occurring in one of 500 newborns. Both conditions are incurable and involve increased morbidity and mortality. A gender-specific issue that has occasionally arisen for genetic counselors for cystic fibrosis (and other autosomal recessive diseases) is misattributed paternity. Genetic tests for cystic fibrosis may indicate that the husband or the man thought to be the genetic father is most likely not genetically related to a particular fetus or offspring. Such information is not requested usually; it is simply a by-product of information obtained about the genetic status of the fetus or child. What, if anything, should the genetic counselor or practitioner do with this information? Studies show that the majority of counselors will communicate the information to the woman alone and hope or suggest that she reveal it to her husband.i,* If she will not or does not do so, then the counselor is unlikely to breach confidentiality. Apparently, the genetic counselor thus defines the woman rather than her husband as her primary client. The reasons commonly offered for nondisclosure in such circumstances are a desire to maintain the strength of the family system and support for the autonomy of the woman. Recently, the Institute of Medicine published a report articulating the same position as that held by the majority of genetic counselors. 3 The Institute recommends that information on misattributed paternity be communicated to the mother but not be volunteered to the woman’s partner. A notion of gender justice supports the Institute of Medicine position as well as the position of genetic counselors by arguing that even when couples come together for genetic counseling, the woman is the primary client because she is most affected by the decision. Women are more affected than men physically because of prenatal diagnosis and prenatal interventions, and socially because they are more likely to be the main caregivers of children, whether affected or not. In light of the gender discrepancies in impact, when the interests of husband and wife appear to conflict, gender justice calls for giving priority to the woman’s interests. In cases of conflict, then, the interests of those affected most count most. Although the genetic basis of sickle cell disease has been known since the late 194Os, the history of how that information was handled constitutes a significant warning regarding the current potential for genetic discrimination against minorities and women.4 In part because of ignorance, but, quite possibly, because of racism as well, people at risk, carriers, and those affected were subjected to discrimination in employment and insurance practices. But a more discrete issue arises with regard to sickle cell disease and other autosomal recessive disorders for which carrier testing is available. This is the question of whether prenatal genetic testing may be denied to women in situations where the partner is unwilling or unable to be tested. Carrier testing
generally is based on a desire to ensure that one’s progeny are not affected by specific conditions, but a definitive prenatal diagnosis cannot be obtained unless both partners are tested. Accordingly, prenatal diagnosis is commonly recommended when both partners are known to be carriers but not if only one parent is a carrier. Robert Murray defends the denial of carrier testing to women whose partners are unwilling or unable to be tested on the grounds that this is an inappropriate expenditure of resources (RF Murray, personal communication). He is also concerned that testing pregnant women without testing their partners may undermine the family structure and family decision making. Testing also presents some risk to the fetus. In contrast, James Bowman argues in favor of the autonomy of the pregnant woman who has a right to be tested regardless of her partner’s willingness or availability (J Bowman, personal communication). After all, he says, there are many single-parent families headed by women in which the male partner is either absent or unavailable. Bowman claims that the actual risk of a carrier having an affected child when the carrier status of her partner is not known is quite high (one in 40) if her partner is African-American. Gender justice seems to support Bowman’s opinion rather than Murray’s on this issue. Families, after all, are families, regardless of whether they are headed by couples or by individuals. Pregnant women rather than their partners still bear the risk of testing and the burden of decision making and interventions as well as (in most cases) major responsibilities for raising affected and unaffected children. Once again, then, a desire to balance the burdens and benefits to men and women, to reduce inequity, or to promote equality supports the woman’s right to be tested. As Bowman observed, one in 40 is a higher risk than the risk rates on which testing for Down’s syndrome has been based. In sum, promoting gender justice in genetics involves at least the following steps. First, the avoidance of gender-neutral language in practices and situations where men and women are not equally affected. Second, distinguishing 1) between gender differences that lead to inequity and 2) between differences that are changeable and those that are not. Differences among people (whether racial, sexual, and so forth) enrich us both morally and materially so long as they do not lead to advantages of one group vis-a-vis the other. But, third, after identifying the differences that lead to inequities, we need to change those that are changeable in order to reduce the disparity, and, where this is impossible, we need to introduce measures that reduce or ameliorate the disparity. Policy recommendations that emerge from the Ethical, Legal, and Social Issues program of the HGP need to use this type of analysis with regard to each new advance.
REFERENCES 1. Wertz DC, Fletcher JC. Moral reasoning among medical geneticists in eighteen nations. Theor Med 1989;10:123-38. 2. Pencarinha DF, Bell NK, Edwards JG, Best RG. Ethical issues in genetic counseling: a comparison of M.S. counselor and medical geneticist perspectives. J Gene Counseling 1992;1:19-30. 3. Andrews LB, Fullarton JE, Holtzman NH, Mutulsky AC. Assessing genetic risks: implications for health and social policy. Washington (DC): National Academy Press, 1994. 4. Bowman J, Murray RF. Genetic variation and disorders in peoples of African origin. Baltimore: Johns Hopkins University Press, 1990).