Why Do Disability Activists Reject the Genome Project?

描述（由申请人提供）：人类基因组计划的ELSI计划已经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，一个选区仍然对人类基因组计划和优生学感到担忧。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（包括HGP的大多数支持者）不同的残疾概念。根据残疾人权利概念，残疾的不利处境是由阻碍残疾人融入社会的社会和物质障碍造成的，而不仅仅是由损伤本身造成的任何固有不利处境造成的。这与许多支持人类基因组计划的生物伦理学著作的假设相反。因此，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减轻DR社区对人类基因组计划“优生”目标的担忧。该项目将调查传统残疾观的概念基础，其特点是DR活动家的残疾“医学模式”（根据该模式，不利条件是受损状态所固有的）和DR“社会模式”（根据该模式，不利条件是社会造成的）。因为这种冲突可能是一个真正的僵局，设想这个问题的替代方法将被研究。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与人类基因组计划相一致。

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.