Prenatal Testing for Genetic Disability

This project will investigate the nature of disability to articulate, for public policy, the purposes for which emerging testing capabilities ought ethically to be used. To analyze the nature of disability, the project participants--including experts from disability studies, medical geneticists, genetic counselors, philosophers, and others--will examine two distinctions that are not well addressed in the literature: the distinction between nondisease and disease traits, and the distinction between medical and social disabilities. The project will draw on the social scientific data already available and on the expertise of project participants to examine the psychological, social, and economic dimensions of the impact of disability on families and society through a series of case studies in sickle cell anemia, Down syndrome, Alzheimer disease, schizophrenia, deafness, male homosexuality, and gender. In tandem with its investigation of existing data concerning what the impact of people with disabilities is, the project will explore the normative questions of how families and society ought to think about and respond to different kinds of disability. The project will produce a policy statement on the nature of disability and about the values that ought to be considered in decisions about prenatal testing aimed at the elimination of disabling conditions.