Something old and something new.

The President's Council on Bioethics has explored a range of reproductive technologies over the last two years. It has now issued its findings and recommendations in a new report, Reproduction & Responsibility: The Regulation of New Biotechnologies. The report raises some important issues, but also overlooks some important concerns while overemphasizing others that are less immediate. The report begins by laying out the "human goods" at stake. For some of these goods, such as protecting the health and well-being of children born with the aid of new reproductive technologies, the report endeavors to provide targeted recommendations. On others, however, the report is largely silent. To be sure, some of these goods may be less amenable to specific actions. But others, such as protecting the privacy of medical and genetic information and preventing inequality and discrimination based on genetic information, are ripe for policy and regulatory action based on a robust ethical and policy analysis. Regrettably, the report merely enumerates privacy and nondiscrimination as important goods, then dismisses them from consideration because these issues "have been the focus of professional self-regulation and legislative enactments." In truth, the nation has as yet been unable to enact legislation to protect against genetic discrimination, and clear and strong recommendations from the council on this matter would have been of considerable value in spurring legislative action. Although the title of the report suggests its subject is "new biotechnologies," the focus is actually split between the now quarter-of-a-century old technology of in vitro fertilization and some "new" technologies that are, as yet, only imagined. What links the old and futuristic technologies considered in this report is that they all involve the creation or manipulation of the human embryo outside a woman's womb. This presents another gap. Technologies involving the creation and manipulation of human embryos in the laboratory do indeed raise important safety and ethical concerns, yet other biotechnologies that are in widespread and growing use in reproduction, namely prenatal and carrier testing, are not considered at all. Millions of prospective parents each year are using genetic testing to find out about their own genetic makeup or that of their developing fetus and to make profound reproductive decisions. For many, planning for and building a family is the first time they must confront the many issues that attend genetic testing. As the number, type, and complexity of genetic tests continues to grow, so too will the questions that parents, prospective parents, and society must face regarding safety, equity, discrimination, human worth, and the meaning of a good life. The report shines klieg lights on some issues in reproductive medicine that have not received enough attention. In particular, the report focuses attention on assisted-reproduction technology (ART) and the need for more data regarding the long-term health effects of ART on women and children. Like the council, I am deeply troubled that, with greater than 1 percent of all newborns in the United States getting their start with ART, we in the United States have done very little to assess the health and developmental outcomes of this growing segment of our population. When prospective parents are making decisions about bringing a child into the world and how they will go about doing it, they should have access to complete and accurate information on the risks and benefits to themselves and their future child. Thus I support the report's recommendations that a federally funded longitudinal study be undertaken to assess the impact of ART on children. The council also recommends that the planned NIH National Children's Study be used as a vehicle for collecting this data. This proposal is initially tantalizing because of its simplicity and minimal relative cost, but the NIH study would be unlikely to provide much meaningful data on ART children because the numbers will simply be too small. …