This project will study the role of patient preferences and other factors in choices regarding use of prenatal screening for and diagnosis of chromosomal disorders in a racially/ethnically diverse population. The study will collect detailed information regarding the distribution of individual preferences for test characteristics and outcomes by racial/ethnic group, as well as other factors which may be related to choices regarding the use of these tests.
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.