Why Do Disability Activists Reject the Genome Project?

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.