At Law: Ethics: Public and Private

Abstract

Lacking a formal, broadly based deliberative body, United States has had to rely on ad hoc efforts of groups like American Medical Association as means for examining and reaching conclusions about a range of bioethical issues. Despite impetus of an October 1993 Senate hearing on public bioethics ethics policymaking and introduction of Senate Bill S. 1042, [1] momentum toward congressional action on proposals for a new advisory panel has apparently dissipated. Yet several recent developments - in science, in public policy, and in activities of unofficial ethics bodies - serve as reminders of need for prompt legislative action. The most striking signals come in form of new scientific findings whose social and ethical consequences have not been adequately addressed, much less resolved, through existing venues. One example was mid-September announcement that gene implicated in many cases of familial breast cancer (BRCA1) had been discovered.[2] While various groups at National Center for Human Genome Research have worked conscientiously on ethical, social, and legal issues of genome mapping, little public discussion has occurred on such important issues as whether scientists should be able to patent a human gene like BRCAI. Are such questions to be left to Patent Office to resolve on technical grounds? Similarly, what are implications of expected development of means for routine BRCA1-testing for 600,000 American women who may carry defective versions of this gene, especially when they apply for health or life insurance? A National Advisory Commission While constant stream of headline-grabbing scientific developments provides dramatic reminders of absence of answers, a perhaps more compelling reason for congressional action may be White House Office of Science and Technology Policy's proposed charter for a new National Bioethics Advisory Commission.[3] The members of bioethics panel, actually an advisory committee to National Science and Technology Council (NSTC), come from outside government. The president may appoint up to fifteen members, including chairperson, for overlapping four-year terms, with at least three members coming from general public and at least one each from bioethics and theology, social and behavioral science, law, medicine and allied health professions, and biological research. The commission identify broad, overarching principles to govern ethical conduct of research,, but shall not be responsible for review and approval of individual projects. While probably better than nothing, proposed National Bioethics Advisory Commission has three major drawbacks over a legislatively authorized body: mandate, location, and independence. Despite claim that new body would expand work of such predecessors as National Commission for Protection of Human Subjects and President's Commission for Study of Ethical Problems in Medicine, its proposed mandate is vague. The charter concentrates on the bioethical issues arising from research on human biology and behavior, which suggests that commission's existence obviate need for ad hoc panels like those convened recently on such problems as radiation research and experiments with human embryos. Clearly, for reasons both of consistency and of efficiency, a standing body has many advantages, yet Office of Science and Technology Policy does not mention ad hoc panels in justifying National Bioethics Advisory Commission, leaving doubt whether it is conceived as a substitute for problem-specific bodies. The Office of Science and Technology Policy candidly admits doubt about how best to define scope of commission's charge to meet public needs for deliberation of bioethical issues without being so broad as to limit its effectiveness. …