PRENATAL TESTING FOR GENETIC DISABILITY

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Increasingly, prospective parents will be able to get prenatal genetic tests for characteristics that, though not disease related, some persons nonetheless consider socially "disabling," such as female gender or male homosexuality. Coupled with conflicting attitudes toward people with medical disabilities, the emerging ability to test, genetically, for socially disabling conditions lends new urgency to questions already posed by the disability community. Namely, what values ought to be considered, and what purposes ought to be promoted, with prenatal genetic testing? The standard response has been that the proper purposes of such testing are to reduce suffering and enhance the autonomous choice of prospective parents. But is this standard answer truly adequate? This project investigates the nature of disability to enlarge that answer and 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--must begin by examining 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. Examining these distinctions will (1) help assess the disability community's claim that they are discriminated against because those without disabilities misunderstand these distinctions, and (2) help craft a public policy statement that will use those terms in a nondiscriminatory way. 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 the already existing data concerning what the impact of people with disabilities is, the project will explore the normative question of how families and society ought to think about and respond to different kinds of disability. The primary output of the project will be 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.