Sample genetic policy language for research conducted with native communities

  • Burhansstipanov L
  • Bemis L
  • Kaur J
 et al. 
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Abstract

BACKGROUND: [corrected] We have been repeatedly asked to clarify genetic issues that have cultural ramifications for Native communities. METHOD: In the following commentary, we explain selected genetic issues that may vary among tribal nations; nonetheless, scientists should allocate sufficient time to meet with the tribal leaders and/or members of the tribal institutional review board prior to designing a genetic study to learn how selected issues are perceived by that specific tribal nation. RESULTS: Tribal nations generally encourage and mandate community-based participatory research methodology. CONCLUSIONS: We have included in this commentary draft language for study protocols to support researchers and tribal nations when developing studies pertaining to genetic issues

Author-supplied keywords

  • Communication
  • Consumer Participation/methods
  • Cultural Characteristics
  • Genetic Research
  • Genetic Testing/methods
  • Humans
  • Indians,North American
  • Language
  • Patents as Topic
  • Policy Making
  • Research
  • Specimen Handling/methods

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Authors

  • L Burhansstipanov

  • L Bemis

  • J S Kaur

  • G Bemis

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