Human Genome Project: Disability, Bioethics and Conflict

点击翻译按钮获取中文摘要

This project is a contribution to the "Ethical, Legal and Social Implications" (ELSl) Program of the Human Genome Project (HGP). The ELSl Program was originated, in part, to assure the public that the study of modern genetics would not make the horrible mistakes of the eugenic programs of the early twentieth century. For the most part, it has been successful. But one group still perceives the HGP as largely eugenic, and contrary to the group's interest. Disability Rights advocates continue to be skeptical of the HGP, and continue to consider it as eugenic. Most of the bioethicists who work within the ELSl Program reject the Disability Rights argument. And, while the Disability Rights argument may indeed be wrong, so long as their interests are merely rejected, the Disability Rights advocates will continue to consider the HGP contrary to their interests. This project will attempt to ascertain the conceptual foundations of the clash between bioethicists and the Disability Rights advocates who are skeptical of the HGP. It will carefully study the bibiographic history of the debate and its rationale on both sides. A number of aspects of the conflict have been identified. These include 1) differing view on the concept of the quality of life, 2) differences on what counts as "eugenics," 3) ways of analyzing the attribution of causality in complex causal contexts, and 4) the possibility of regarding the Disability Rights advocacy as expressive of a cultural ethics, rather than a moral assertion to be refuted by bioethicists defending the HGP. The long term goal of the project will be to produce a book on these conflicts and hopefully on their resolution. The immediate goal is to document the methodological core of each side of the debate, and examine how data and concepts from other fields might be relevant to a resolution.