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Sample genetic policy language for research conducted with native communities.

Linda Burhansstipanov1, Lynne Bemis, Judith S Kaur

  • 1Native American Cancer Research Corporation, Pine, CO 80470-7830, USA. LindaB@NatAmCancer.org

Journal of Cancer Education : the Official Journal of the American Association for Cancer Education
|May 27, 2005
PubMed
Summary

Researchers must consult tribal leaders before genetic studies to address culturally sensitive genetic issues. Community-based participatory research is encouraged, and draft protocols are provided for collaboration.

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Area of Science:

  • Genetics
  • Indigenous Studies
  • Bioethics

Background:

  • Native communities frequently request clarification on genetic issues with cultural implications.
  • Understanding diverse tribal perceptions of genetic research is crucial.

Purpose of the Study:

  • To provide guidance for researchers on navigating genetic issues within Native communities.
  • To promote culturally sensitive and collaborative genetic research practices.

Main Methods:

  • This commentary explains genetic issues that may differ across tribal nations.
  • It emphasizes the importance of consulting tribal leaders and institutional review boards before study design.
  • Community-based participatory research (CBPR) is highlighted as a preferred methodology.

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Main Results:

  • Tribal nations generally support and require community-based participatory research.
  • Researchers must engage with specific tribal nations to understand their perspectives on genetic research.

Conclusions:

  • Draft language for study protocols is provided to assist researchers and tribal nations.
  • This resource aims to facilitate ethical and collaborative genetic research with Indigenous communities.