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In Genes, Women, Equality Mary Briody Mahowald employs feminist standpoint theory to assess the ethics of various genetic interventions and the inequities likely to result from their use. Her focus on questions of justice is a refreshing approach at the intersection of two fields - genetics and bioethics - that in recent decades have given pride of place to autonomy.
Mahowald takes up familiar exemplar diseases and issues, such as sickle cell screening, BRCA1/2 testing, and discovery nonpaternity in cystic fibrosis testing. However, she frequently offers fresh connections to other concerns and literatures, such as the literature on disability rights to which she is herself a prominent contributor. While other analyses of carrier screening programs often suggest that discrimination against sickle cell carriers might have been avoided if African-American leaders and churches had been involved in sickle cell screening programs the way that rabbis and synagogues are involved with Tay Sachs carrier testing, too few bioethical discussions explore what Mahowald notes: African-American community leaders and even the Black Panthers, in fact, supported sickle cell screening in hope of securing increased attention to the health care of African-Americans, but they were misinformed about the screening programs' potential benefits. When discussing disclosure of misattributed paternity, unlike many other authors, Mahowald considers the risk of domestic violence and effects on familial economic well-being. Throughout the volume, Mahowald examines the promises and perils of genetic interventions against a backdrop of social inequities, health disparities across races and economic classes, and the feminization of poverty. She considers how genetics may exacerbate existing inequities - within families, in health care, and between "haves" and "have nots." She indicates the effects of power imbalances in both ostensibly private and obviously public domains and emphasizes the effect of public policies on "private" choices.
In the thirteen pages she devotes to behavioral genetics, Mahowald recognizes that this field encompasses both behavioral traits and conditions considered illnesses. She highlights gender-related differences in the prevalence and social significance of various traits and conditions, and then focuses on alcohol dependence. Here, as in other chapters, the case she discusses demonstrates the interplay between environmental factors, both physical and social, and genetics. Her ethical analysis recognizes that what may be appropriate to urge as a matter of individual conscience and personal decision making may not be justified as a matter of coercive social policy.
Mahowald's readable and rather comprehensive volume reveals genetics to be more complex - scientifically and socially - than many acknowledge. She counters, for example, the prevailing impression that breast cancer genetics and interpretation of mutation testing are straightforward. Although not the only author to reject facile explanations, Mahowald explains genetic complexities especially clearly and illuminates the ethical importance of dealing with these complexities in designing policies or making individual decisions about testing and prevention. Her concise introduction to assisted reproduction technologies and their synergy with genetic advances is wonderfully clear.
Throughout the volume, Mahowald makes science salient to ethical analysis. Bioethics has long recognized the importance of "is" to "ought," the relevance of how things are to how they ought to be, and Mahowald draws upon medical and social science research to describe current problems, suggest paths of resolution, and signal areas of future concern. One example of Mahowald's weaving together ethical concern and empirical evidence involves the concepts of family and parenting. She emphasizes the role of choice (or lack thereof) with respect to family ties, which forms a theme found throughout the volume; for example, she considers the relevance for domestic stability and risk of domestic violence, of choice with respect to adopted children and domestic partners, as well as the lack of choice one has with respect to having stepchildren.
Drawing on her own empirical research, Mahowald discusses parental desire for biological connection to children, considers both genetic and gestational ties, and presents data about the different priorities of men and women in this regard. This chapter on genetic and gestational ties also highlights a central feature of Mahowald's argument: men and women are and will be differently affected by genetic interventions by virtue of differences of both biology and social situation. In combination with gestational environment, genes are responsible for biological differences between men and women. In the existing social environment, men and women, biologically different, experience inequalities of power. Genetic interventions, at least in many cases, will have relevantly unequal effects on men and women because of their biological differences and social inequality. The results of prenatal testing for a chromosomal anomaly, for example, might equally devastate or reassure both prospective mothers and fathers; however, the needle of amniocentesis enters only the woman's body, and in general, women disproportionately carry the burden of caring for disabled family members. Mahowald persuasively documents these differential effects. Some readers may be less persuaded by her reasons for addressing these differences.
Mahowald uses feminist standpoint theory to support a feminist egalitarian analysis of the issues she examines. She argues that the perspectives of marginalized groups should be privileged in constructing public policy and adjudicating conflicting rights and interests. Despite devoting a chapter to the conceptual foundation and ethical motivation for feminist standpoint theory, at least some readers remain unconvinced that (and uncertain about why) the views and interests of women, racial and ethnic minorities, disabled people, or economially disadvantaged people should be privileged, or given greater weight, than men, the powerful, the advantaged. The reason to give weight to the standpoints of marginalized people, Mahowald argues, is that they have an epistemically privileged perspective on the issues at hand. They can see ethically relevant things that those in dominant positions cannot because they are affected by, for example, developments in genetics in ways that the more advantaged and powerful are not. More conceptually, those in dominant positions are in a position to establish our cultural conception of, for example, "the normal," and more practically, are in a position to design our physical environment to accommodate normally able people and to exclude those less able. Those in dominant positions are not necessarily malicious; they may simply fail to see how physical spaces exclude those less physically able or how technologies or social policies disproportionately burden the already disadvantaged.
Failing to understand the epistemic reason for giving special attention to the perspectives of women and the disadvantaged, readers may worry that Mahowald either is blind to the effects of genetics on men or wants to engage in some brand of reverse discrimination that downplays those effects as a sort of compensatory justice for the less powerful or, worse, a sort of revenge against the more powerful. This would be a misreading of Mahowald's argument and the feminism she advocates. She does not suggest that the perspectives of the advantanged ought to be disregarded, but that the standpoints of the disadvantaged must be included for the sake of accuracy in assessing what "is." Moreover, in determining what ought to be, she argues, their standpoints should be given greater weight when the disadvantaged are likely to bear the greater burdens of innovation - physical, psychological, social, and economic.
This is the reason that Mahowald takes such pains to argue that woman and other disadvantaged groups will be disproportionately affected by genetic innovation. Some readers may grow weary of Mahowald's frequent quick catalogues of how different versions of feminism - e.g., liberal, libertarian, communitarian, egalitarian - would analyze the issues she presents. Nevertheless, she offers unusual perspectives on these issues and describes them such with uncommon richness, complexity, and clarity, that even those who remain unpersuaded by her feminist argument will nevertheless gain a more nuanced understanding of the ways genetics will affect all of us differently. Lisa S. Parker, PhD, a philosopher, is Associate Professor of Human Genetics at the University of Pittsburgh where she serves as Co-Director of the Master of Arts in Bioethics Program and Director of Graduate Education for the Center for Bioethics and Health Law. Her research interests include issues of autonomy and informed consent, ethical issues in genetic research and provision of genetic services, and feminist bioethics.
. Stolba, Christin, and Statel Sally. Review of Genes, Women, Equality, by Mary Briody Mahowald. New England Journal of Medicine 342:1761, June 8, 2000.