Human Genome Project: Disability, Bioethics and Conflict

人类基因组计划：残疾、生物伦理与冲突

• 批准号: 7119047
• 负责人: RONALD A. AMUNDSON
• 金额: $ 3.5万
• 依托单位: UNIVERSITY OF HAWAII AT HILO
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/7119047
• 关键词: books; conflict; ethics; functional /structural genomics; history of life science; human; information dissemination; legal /correctional; morals; perception; person with disability; prejudice; quality of life; sociology /anthropology

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.

本项目是对人类基因组计划（HGP）“伦理、法律和社会影响”（ELSl）计划的贡献。ELSl计划的创立，部分是为了向公众保证，现代遗传学的研究不会犯20世纪早期优生计划的可怕错误。在很大程度上，它是成功的。但是有一组人仍然认为HGP在很大程度上是优生学的，这与该组的利益背道而驰。残疾人权利倡导者继续对HGP持怀疑态度，并继续认为它是优生的。在ELSl项目中工作的大多数生物伦理学家都反对残疾人权利的论点。而且，虽然残疾人权利的论点可能确实是错误的，但只要他们的利益只是被拒绝，残疾人权利倡导者就会继续认为HGP违背了他们的利益。