Why Do Disability Activists Reject the Genome Project?

为什么残疾活动人士拒绝基因组计划？

• 批准号: 7257941
• 负责人: RONALD A. AMUNDSON
• 金额: $ 6.92万
• 依托单位: UNIVERSITY OF HAWAII AT HILO
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-02-01 至 2009-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7257941
• 关键词: Accounting; African American; Archives; Area; Attitude; Bioethics; Bioethics Consultants; Biological; Books; Communities; Conflict (Psychology); Critiques; Development; Disabled Persons; Disadvantaged; Ensure; Eugenics; Foundations; Fright; General Population; Genetic; Genetic Variation; Genome; Genomics; Genotype; Goals; Human; Human Genome Project; Impairment; Legal; Length; Mainstreaming; Manuscripts; Medical; Medicine; Methodological Studies; Methods; Modeling; Movement; NIH Program Announcements; Nature; Oral cavity; Outcome; Persons; Phenotype; Philosophy; Population; Publications; Published Comment; Purpose; Recording of previous events; Research; Rights; Role; Route; Scholarship; Science; Side; Subgroup; Work; base; concept; developmental genetics; disability; genetic technology; programs; prospective; psychologic; social; social model; social organization

DESCRIPTION (provided by applicant): The ELSI program of the Human Genome Project has successfully calmed the fears of most constituents regarding the potential for a "eugenic" misuse of modern genetic technology. However, one constituency still has major fears regarding the HGP and eugenics. This is the disability rights (DR) community. DR critiques of the HGP are based on a distinct concept of disability from that of mainstream medicine including most supporters of the HGP. According to the DR concept, the disadvantages of disability are caused by social and physical barriers to inclusion of people with disabilities, not to any inherent disadvantage from impairments alone. This is contrary to the assumptions of many bioethical writings that favor the HGP. For this reason, tension has arisen between some bioethicists and DR activists, and the writings of these bioethicists do not allay the concerns of the DR community with respect to the "eugenic" aims of the HGP. This project will investigate the conceptual foundations of the traditional view of disability, characterized as the "Medical Model" of disability by DR activists (according to which disadvantages are inherent to an impaired state) and the DR "Social Model" (according to which disadvantages are socially caused). Because this clash may be a true impasse, alternative ways of conceiving the problem will be studied. The project will attempt to find ways of articulating the nature of disability and the goals of the HGP so that the social and political goals of the disability rights movement may be seen to be consistent with the Human Genome Project.

描述(由申请人提供)：人类基因组计划的ELSI计划成功地平息了大多数成员对现代基因技术可能被“优生”滥用的担忧。然而，有一个选民仍然对人类基因组计划和优生学有很大的担忧。这就是残疾人权利(DR)社区。Dr对HGP的批评是基于与主流医学不同的残疾概念，包括HGP的大多数支持者。根据DR的概念，残疾的缺点是由于社会和身体上的障碍而导致的，而不是仅仅因为残疾而造成的任何固有的不利因素。这与许多支持HGP的生物伦理学著作的假设相反。出于这个原因，一些生物伦理学家和DR活动家之间出现了紧张关系，这些生物伦理学家的著作并没有缓解DR社区对HGP“优生”目标的担忧。该项目将调查传统残疾观点的概念基础，该观点被DR活动家描述为残疾的“医学模式”(根据该模式，残疾是受损国家固有的)和DR的“社会模式”(根据该模式，不利因素是由社会造成的)。由于这场冲突可能是真正的僵局，因此将研究设想这一问题的替代方法。该项目将设法阐明残疾的性质和人类基因组计划的目标，以便残疾人权利运动的社会和政治目标可以被视为与人类基因组计划一致。