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Ethical Issues in Conducting Research with Deaf Populations
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Details:
  • Pubmed ID:
    24134363
  • Pubmed Central ID:
    PMC3966694
  • Description:
    Deaf American Sign Language (ASL) users represent a small population at risk for marginalization from research and surveillance activities resulting from cultural, language, and ethical challenges. The Deaf community's view of deafness as a cultural identity, rather than a disability, contradicts the medical community's perception of deafness as a disease or deficiency in need of correction or elimination. These differences continue to have significant cultural and social implications within the Deaf community, resulting in mistrust of research opportunities. Two particularly contentious ethical topics for the Deaf community are the absence of community representation in genetic research and the lack of accessible informed consents and research materials. This article outlines a series of innovative strategies and solutions to these issues, including the importance of community representation and collaboration with researchers studying deaf populations.

  • Document Type:
  • Collection(s):
  • Funding:
    K01 HL103140/HL/NHLBI NIH HHS/United States
    K01 HL103140/HL/NHLBI NIH HHS/United States
    T32HL793711/HL/NHLBI NIH HHS/United States
    U48 DP000031/DP/NCCDPHP CDC HHS/United States
    U48 DP001910/DP/NCCDPHP CDC HHS/United States
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