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Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions

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  • Gollust, S.E.
  • Apse, K.
  • Fuller, B.P.
  • Miller, P.S.
  • Biesecker, B.B.

Abstract

Because the introduction of genetic testing into clinical medicine and public health creates concerns for the welfare of individuals affected with genetic conditions, those individuals should have a role in policy decisions about testing. Mechanisms for promoting participation range from membership on advisory committees to community dialogues to surveys that provide evidence for supporting practice guidelines. Surveys can assess the attitudes and the experiences of members of an affected group and thus inform discussions about that community's concerns regarding the appropriate use of a genetic test. Results of a survey of individuals affected with inherited dwarfism show how data can be used in policy and clinical-practice contexts. Future research of affected communities' interests should be pursued so that underrepresented voices can be heard.

Suggested Citation

  • Gollust, S.E. & Apse, K. & Fuller, B.P. & Miller, P.S. & Biesecker, B.B., 2005. "Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions," American Journal of Public Health, American Public Health Association, vol. 95(1), pages 35-41.
    • Handle: RePEc:aph:ajpbhl:10.2105/ajph.2003.025734_6
    DOI: 10.2105/AJPH.2003.025734
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    Cited by:

    1. Goven, Joanna, 2008. "Assessing genetic testing: Who are the "lay experts"?," Health Policy, Elsevier, vol. 85(1), pages 1-18, January.
    2. Marsh, Vicki & Kamuya, Dorcas & Rowa, Yvonne & Gikonyo, Caroline & Molyneux, Sassy, 2008. "Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya," Social Science & Medicine, Elsevier, vol. 67(5), pages 721-733, September.
    3. Gail E. Henderson, 2008. "Introducing Social and Ethical Perspectives on Gene—Environment Research," Sociological Methods & Research, , vol. 37(2), pages 251-276, November.

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