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.

Genetic testing for deafness is now a reality with the identification of Connexin 26 (Cx26, GJB2) as a cause of up to 50% of nonsyndromic sensorineural deafness. Because deafness is viewed as a personal trait, rather than a medical condition, by many individuals, the impact of genetic information on deaf/hard of hearing (hoh) individuals and members of the Deaf community needs to be empirically examined to fully understand the ethical, social, and clinical ramifications of genetic testing for deafness.