Since the advent of the Human Genome Project in 1990, a range of ethicists, geneticists, medical professionals, and commentators have explored the implications of this government-sponsored effort to map and sequence the human genome. The past decade has also witnessed an increase in explorations of science and scientific methods by feminist theorists. Mary Briody Mahowald, a well-known contributor to the literature of feminist bioethics, bridges these two fields in Genes, Women, Equality, a study of “gender equality in genetics.” The result should be of interest to bioethicists, feminist theorists, and practitioners in the field of medical genetics.
The book covers a broad range of issues, including genetic testing, behavioral genetics, cloning, and fertility treatments, as well as disability and policy-oriented questions such as the availability of genetic counseling services and health insurance. The broad net Mahowald casts is both a strength and a weakness – though she raises numerous provocative questions, readers might find that the book’s sixteen chapters, each with its own numerous subheadings, often read as a series of small essays rather than as a coherent text.
Several sections of the book stand out. Mahowald’s examination of the vagaries of gene therapy, particularly the ethical implications of enhancement techniques as opposed to curative and preventive ones, are engaging and informative. Her discussion of fertility treatments such as preimplantation genetic diagnosis offer the reader an entrée into the ethical territory unearthed by new reproductive technologies.
Throughout the book, Mahowald’s ethical compass points to a “feminist egalitarian standpoint theory.” Thus, she constantly invokes and places great value on the perspectives of “non-dominant” groups – here defined as women, the poor, racial and ethnic minorities, and the disabled. White men, it is assumed, have a discrete worldview that, according to feminist theory, is often inimical to the well-being of women.
Drawing on the work of feminist theorists such as Nancy Hartsock and Donna Haraway, Mahowald rejects objectivity in bioethics as a pretense and chides bioethicists and geneticists for failing to recognize that their “dominant” position in society has fostered myopia about the experiences of non-dominant groups. For Mahowald, critique and correction of this near-sightedness are the first steps on the path to "gender justice" in genetics.
But Mahowald’s feminist egalitarian standpoint rests on several questionable assumptions. For example, the notion that non-dominant groups in society have a superior perspective simply because of their non-dominant position – and thus that geneticists and bioethicists should ascribe to them a “privileged status” is presented uncritically, as is her claim that biological differences between the sexes are necessarily “disadvantageous” for women and thus require social policies to reduce their harmful impact.
Weaknesses in the feminist standpoint theory also emerge when Mahowald tackles difficult questions about women’s autonomy with regard to genetic technologies. Mahowald suggests, for example, that pre-birth genetic enhancement – i.e., strategies to improve a child’s physical and intellectual endowments – could create a new form of discrimination against women, as they face “overt and covert” pressure to genetically alter potential children. While it is worthwhile to question what influence social expectations might have on an individual’s decision to seek genetic therapies, Mahowald attributes that risk solely to women. In the process she misses far more provocative questions, such as how feminist standpoint theorists reconcile the fact that there are many women who, if given the opportunity, would eagerly engage in genetic manipulation to engineer perfect children for themselves.
The conclusions Mahowald draws from some of her case studies are also less than compelling, such as the story of Julia, a pregnant 27-year-old afflicted with the metabolic disorder phenylketonuria (PKU) who refused to follow dietary restrictions during her pregnancy and gave birth to a severely-retarded child as a result. Invoking feminist standpoint theory, Mahowald defends Julia’s behavior by arguing that her interests – as the individual “most significantly affected” by the birth of the child, were paramount. Though the story is rife with possibilities for further examination, particularly the ethical implications of the interests of the potential child, Mahowald relegates these concerns to a footnote, where she avers that as a non-autonomous being, the child’s interests are not at issue.
Mahowald’s feminist orientation sometimes leads her to accept claims uncritically. For example, she states that women have been underrepresented in clinical trials. This is a myth that is entrenched in the women’s health literature. Her “gendered” outlook prompts her to see potential victims around every corner. For example, she worries that genetic researchers may try to “coopt” poor or uninsured women as unpaid test subjects in clinical studies of no demonstrable benefit to the women.
Mahowald's use of feminist standpoint theory is not without its strengths. Her dedication to "collaborative inquiry" in genetics is surely a worthy goal, and questions about the public's access to and understanding of genetic technology are issues about which all medical geneticists should be aware. Mahowald’s argument for a more inclusive bioethics is fully in keeping with the emphasis feminist bioethicists place on marginalized social groups, and when it serves as a reminder to medical geneticists to consider the different experiences of their patients, it is useful. But in looking constantly to the margins, Mahowald often misses the solid center – the questions about moral agency and ethics that apply to all individuals, regardless of group identification.
Despite the difficulties mentioned with Mahowald’s use of feminist standpoint theory, the book offers readers a good introduction to the range of questions feminist bioethicists are posing. While we may not reach a state of complete ethical certainty on many of these issues, Mahowald’s work serves as an excellent reminder that genetics requires of its practitioners a continuing commitment to their exploration.
