Stigma and discrimination are recognized as potentially important consequences of advances in genetic information. Important work in this area has focused on discrimination against people with genetic predispositions to disease by insurers, employers, and educational institutions. The investigators propose an expansion of this concern to a more broadly conceived study of stigma by focusing on public attitudes, behavioral intentions and policy orientations. Specifically, they are concerned with the impact of perceived genetic etiology on orientations towards individuals and families affected by illnesses. The investigators focus on mental illnesses, because they are clearly stigmatizing, there is strong and growing evidence for genetic involvement in several mental disorders, and there are strong and conflicting predictions regarding the likely impact of biological understandings of mental illness on stigma. Despite their importance, no systematic study of these questions exists. The investigators propose a multi-method research plan that includes in-depth interviews with 100 adults from 5 ethnic groups (African-, Chinese-, European-, Mexican-, and Puerto-Rican-Americans), and a random-digit-dial telephone survey of the adult U.S. population, with oversamples of each of the above minority ethnic groups, as well as of persons whose families are affected by a serious mental illness, to address the following aims: 1) to assess the impact of an attributed genetic etiology on orientations toward individuals and families affected by a serious mental illness; (2) to determine the characteristics of respondents (e.g., education, age or ethnicity) that are associated with more stigmatizing attitudes and orientations; (3) to examine types of information that may ameliorate any stigmatizing effects of perceived genetic etiology; and (4) to assess experiences of stigma on the part of families affected by mental illness and their perceptions of the way knowledge of genetic etiology may impact the stigma they face. The achievement of these aims will provide critical information on a nationwide basis concerning the nature and extent of public stigmatization of people who have or are at risk for developing genetic diseases. By identifying the attitudes and beliefs that drive stigmatization and discrimination, the investigators will be better poised to address the social consequences of the expansion of knowledge about the human genome.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
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Special Emphasis Panel (ZRG1-GNM (01))
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Boyer, Joy
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Columbia University (N.Y.)
Public Health & Prev Medicine
Schools of Public Health
New York
United States
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