Testimony before the NIH Human Embryo Research Panel.
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The development of public policy on bioethical issues can be approached through substantive moral and philosophic reasoning, or through balancing perceived societal views as to what is ethically acceptable. The Human Embryo Research Panel had to apply the first approach to the question of the moral status of the preimplantation embryo. Only after concluding that the preimplantation embryo was not a full human subject could the panel consider the conditions under which embryo research was ethically acceptable, given a range of societal views, concerns, and interests.
Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel.
In this chapter, I review some of the background thinking concerning matters of moral status that I had developed in previous years and that I would now bring to the work of the Human Embryo Research Panel. Two ideas were at the forefront of my thinking. First, that biology usually offers not decisive "events" but only continuous processes of development. Second, in making status determinations we do not so much "identify" a point on a developmental continuum where moral respect should be accorded as "choose" that point. These choices are "balancing decisions" in which the community of moral agents weighs its interests in protecting an entity against the burdens of doing so. After illustrating these two contentions, I consider some of the reasons why thinkers on the "right" and "left" of our bioethics debates have resisted or missed this basic insight.
Three basic political positions on embryo research will be identified as libertarian, conservative, and social-democratic. The Human Embryo Research Panel will be regarded as an expression of the social-democratic position. A taxonomy of the ethical issues addressed by the Panel will then be developed at the juncture of political and ethical modes of reflection. Among the arguments considered will be those for the separability of the abortion and embryo research debates; arguments against the possibility of the preembryo being a person, especially arguments associated with totipotency and the significance of the primitive streak; and the various reasons for regulating embryo research, including those associated with respect for the preembryo, the protection of traditional views of human procreation, and the prevention of commercialization.
In September 1999, the National Bioethics Advisory Commission (NBAC) submitted its report, "Ethical issues in human stem cell research." The report recommends federal funding for stem cell research involving human embryos remaining after infertility treatment. It also suggests that at some later time, it may be appropriate for there to be federal funding for this same research using embryos expressly created for research purposes. This essay compares this recommendation to a similar recommendation reached 5 years earlier by the Human Embryo Research Panel of the National Institutes of Health. The NBAC recommendation is found to be much better packaged relative to the (contentious) goal of securing federal funding for this type of research. The merits of this goal are not discussed here. Instead, disappointment is expressed with the absence of any serious discussion of the ethical issues raised by the future possibility of stem cell research using research embryos. The report's silence on this question is significant given its promise to promote public debate on the profound ethical issues regarding human stem cell research.
For the first time, a National Institutes of Health advisory panel approved funding for the production of human embryos for research purposes. Oregon voters approved a Death With Dignity Act that empowers physicians to prescribe lethal doses of medication to terminally ill patients.
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Preimplantation genetics describes a newly-emerging field in medical genetics, the consequence of the implementation of clinical preimplantation diagnosis and the likely future development of germ-line gene therapy. Given the existing clinical and laboratory difficulties already demonstrated in preimplantation diagnosis and the sensitive ethical issues surrounding genetic manipulation of human embryos, there is a need for 1) critical and objective evaluation of developments in this field by human and medical geneticists and 2) development of guidelines for research and clinical practice in the years ahead. We propose a course of prospective action for preimplantation genetics implemented through the newly-formed American College of Medical Genetics in order to address the ethics, safety, accuracy, cost, and overall merit of preimplantation genetics.
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