Clinical Versus Experiential Views of Genetic Disability

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DESCRIPTION (provided by applicant): The disability rights critique of prenatal testing asserts that genetic decision-making occurs in a context of misinformation and devaluation regarding the lives of people with genetic and/or prenatal diagnoses and that health professional attitudes reinforce this bias. This is a three-year project designed to explore the areas in which medical genetic advising is, or is not, informed by the lived experience of persons with genetic and/or prenatally diagnosable disabilities. The project will be informed throughout by an Advisory Panel of scholars, professionals, bioethicists, and activists prominent for their work on genetics. The first study uses in-depth interviews to explore the views of genetic counseling professionals, medical specialists, persons with genetic and/or prenatally diagnosable disabilities, and parents of individuals with genetic disabilities (Perspective Informants) regarding issues of life with genetic disability, genetic services, social and professional attitudes toward disability, and determinants of "quality of life." The second study involves the broad national distribution of a questionnaire eliciting opinions on genetics and disability from the stakeholder groups listed above. The primary specific objectives of this research are to: 1) Examine health professionals' views - Investigate knowledge and beliefs about life with genetic disabilities (and related social issues of genetic decision-making) of professionals who apply human genome information to clinical decision-making with patients/clients; 2) Examine the views of persons living with genetic disabilities - Collect information from persons with genetic conditions and parents of persons with genetic disabilities about their experience of life with disability and their views on genetic decision-making in social context; 3) Determine areas of agreement, conflict, and gaps in knowledge - Compare information gathered from the respective stakeholders referenced in Goals 1 and 2 to determine areas of agreement, areas of conflict, and gaps in perspectives; 4) Develop useful recommendations for providing more informed professional training, clinical practice, and policy.