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: 6821126
• 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
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-07-01 至 2007-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6821126
• 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、法律的和社会影响”（ELSI）计划的贡献。ELSI计划的起源，部分是为了向公众保证，现代遗传学的研究不会犯世纪早期优生计划的可怕错误。在大多数情况下，它是成功的。但是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，这与该团体的利益背道而驰。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。大多数在ELSI项目中工作的生物伦理学家都拒绝接受残疾人权利的论点。而且，虽然残疾人权利的论点可能确实是错误的，只要他们的利益只是被拒绝，残疾人权利的倡导者将继续认为人类基因组计划违背他们的利益。 这个项目将试图确定生物伦理学家和残疾人权利倡导者之间的冲突谁是怀疑人类基因组计划的概念基础。它将仔细研究辩论的传记历史及其双方的理由。已经查明了冲突的若干方面。这些包括：1）对生活质量概念的不同看法，2）对什么是“优生学”的不同看法，3）在复杂的因果关系背景下分析因果关系归属的方法，以及4）将残疾人权利倡导视为表达文化伦理的可能性，而不是捍卫人类基因组计划的生物伦理学家所反驳的道德主张。该项目的长期目标将是编写一本关于这些冲突的书，并希望能解决这些冲突。近期目标是记录辩论各方的方法论核心，并研究其他领域的数据和概念如何与决议相关。