Making Responsible Decisions (1999)

An Interpretive Ethic for Genetic Decisionmaking Recently, it seems that virtually every week some new genetic discovery is heralded in the New York Times as the latest medical breakthrough and great hope for humanity. With each new genetic correlation, our opportunities for genetic testing of living persons, developing fetuses, or embryos expand. Today, in addition to detecting specific disease-bearing mutations, it is possible to test for genetic predispositions to disease as well as for physical characteristics and behavioral traits that lie within the normal range of human variation. Genetic testing is typically facilitated by a genetic counselor, who provides her clients with information about their genetic risks and alternatives and interprets test results. The majority of genetic testing is performed prenatally, a practice developed to identify serious genetic disorders in fetuses. Prenatal diagnosis provides prospective parents either with reassurance that their pregnancy appears genetically normal, or, in the event that a genetic mutation is identified, with the option of terminating the pregnancy. But like many technologies, the uses of genetic testing have exceeded the designs of their originators. Today, rare requests for sex selection, testing for late onset disorders, or for aid in deliberately conceiving a child with a disability raise two questions of utmost urgency: What constitutes appropriate use of prenatal genetic testing? and, What are the ethical responsibilities of genetic counselors in their role as gatekeepers to genetic testing? Typical responses to these questions have drawn on a variety of ethical principles, including respect for autonomy, notions of fetal rights, or parental obligations. Taking a different ethical standpoint, I argue that both questions may be answered by means of an ethic of social responsibility. My proposal is inspired by the interpretive ethic of H. Richard Niebuhr, a Protestant theologian of this century whose view of human action suggests an ethical approach for genetic decisionmaking and counseling that can be expressed through the counseling process. Before turning to my proposal, a brief critique of several previous efforts to define the proper uses of genetic testing and the role of counselors may clarify some of the limitations of a principles-based approach. Each of these proposals is critical of the current standard of respect for client autonomy, each focusing either on notions of fetal rights or parental obligations, and each directly or indirectly suggesting that constraints on the uses of genetic testing must be exerted through the professional practices of genetics service providers. The most pragmatic approach is that developed by Jeffrey Botkin, who proposes to control the uses of prenatal diagnosis by restricting testing to certain kinds of conditions corresponding to their severity. Botkin claims that respect for fetal privacy and confidentiality limits parental rights to genetic information; consequently, testing is ethically justifiable only for conditions that would present harms to parents of comparable magnitude to the birth of an unwanted child.[1] Once a list is established of conditions considered serious enough to warrant testing, this approach would distinguish acceptable from unacceptable uses of genetic testing and would take the gatekeeping role out of counselors' hands. The difficulty lies in generating such a list, as there is currently no consensus among genetics professionals as to the perceived severity of various disorders,[2] and any such determination is likely to neglect the values of some individuals. Moreover, such an approach may be slow to respond to advances in medical genetics and therapeutics. But as an effort to find a practicable solution to these questions, Botkin's proposal is a viable possibility. Uncommon but troubling are parental requests for testing that would impose disabilities on their children, as in the case of a Deaf couple who seek to have a Deaf child. …