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Views of discrimination among individuals confronting genetic disease.

Though the US passed the Genetic Information Non-Discrimination Act, many questions remain of how individuals confronting genetic disease view and experience possible discrimination. We interviewed, for 2 hours each, 64 individuals who had, or were at risk for, Huntington's Disease, breast cancer, o...

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Published in:Journal of Genetic Counseling Vol. 19; no. 1; pp. 68 - 84
Main Author: Klitzman R
Format: research tables/charts Journal Article
Published: Wiley-Blackwell Feb2010
Online Access:View this record in EBSCOhost
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        atl: Views of discrimination among individuals confronting genetic disease.
      aug:
        au: Klitzman R
        affil: College of Physicians and Surgeons, Mailman School of Public Health, Columbia University, Unit 15, 1051 Riverside Drive New York 10032 USA
      sug:
        subj:
          Discrimination Psychosocial Factors
          Hereditary Diseases Psychosocial Factors
          alpha 1-Antitrypsin Deficiency Risk Factors
          Breast Neoplasms Risk Factors
          Content Analysis
          Descriptive Statistics
          Discrimination Legislation and Jurisprudence
          Female
          Funding Source
          Grounded Theory
          Human
          Huntington's Disease Risk Factors
          Insurance, Health
          Interviews
          Male
          Triangulation
          Female
          Male
      ab: Though the US passed the Genetic Information Non-Discrimination Act, many questions remain of how individuals confronting genetic disease view and experience possible discrimination. We interviewed, for 2 hours each, 64 individuals who had, or were at risk for, Huntington's Disease, breast cancer, or Alpha-1 antitrypsin deficiency. Discrimination can be implicit, indirect and subtle, rather than explicit, direct and overt; and be hard to prove. Patients may be treated 'differently' and unfairly, raising questions of how to define 'discrimination', and 'appropriate accommodation'. Patients were often unclear and wary about legislation. Fears and experiences of discrimination can shape testing, treatment, and disclosure. Discrimination can be subjective, and take various forms. Searches for only objective evidence of it may be inherently difficult. Providers need to be aware of, and prepared to address, subtle and indirect discrimination; ambiguities, confusion and potential limitations concerning current legislation; and needs for education about these laws. Policies are needed to prevent discrimination in life, long-term care, and disability insurance, not covered by GINA.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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