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: 7285934
• 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/7285934
• 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.

该项目是对人类基因组计划 (HGP) 的“伦理、法律和社会影响”(ELSl) 计划的贡献。 ELSl 计划的起源部分是为了向公众保证现代遗传学研究不会犯 20 世纪初优生计划的可怕错误。在很大程度上，它是成功的。但有一个团体仍然认为人类基因组计划在很大程度上是优生的，并且与该团体的利益背道而驰。残疾人权利倡导者仍然对人类基因组计划持怀疑态度，并继续认为它是优生的。大多数参与 ELSl 计划的生物伦理学家都拒绝接受残疾人权利论点。而且，虽然残疾人权利的论点可能确实是错误的，但只要他们的利益仅仅被拒绝，残疾人权利的倡导者就会继续认为人类基因组计划违背了他们的利益。 该项目将试图确定生物伦理学家和对人类基因组计划持怀疑态度的残疾人权利倡导者之间冲突的概念基础。它将仔细研究这场辩论的传记历史及其双方的理由。冲突的许多方面已经确定。其中包括 1) 对生活质量概念的不同看法，2) 对什么是“优生学”的差异，3) 在复杂因果背景下分析因果关系的方法，以及 4) 将残疾人权利倡导视为文化伦理表达的可能性，而不是被捍卫人类基因组计划的生物伦理学家反驳的道德断言。该项目的长期目标是编写一本关于这些冲突的书，并希望能够解决这些冲突。近期目标是记录辩论双方的方法核心，并研究其他领域的数据和概念如何与决议相关。