4.0 Article

Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities

出版社

JOHNS HOPKINS UNIV PRESS
DOI: 10.1353/cpr.2022.0079

关键词

Community health partnerships power sharing genetics; Native Americans ethics research

资金

  1. National Institutes of Health
  2. [GM116691]
  3. [HGRM1009042]
  4. [U54MD010724]
  5. [HG009500]

向作者/读者索取更多资源

The lack of diversity and Indigenous representation in genetic datasets can be addressed through research models based on equitable partnerships. This article reports on a meeting of Indigenous community-university partnerships in precision medicine research, where the participants prioritized developing trust, respecting Indigenous community authority, and conducting research for the benefit of the community. Other important factors identified include incorporating Indigenous expertise, transparent communication, and building community capacity for involvement in research.
Genetic datasets lack diversity and include very few data from Indigenous populations. Research models based on equitable partnership have the potential to increase Indigenous participation and have led to successful collaborations. We report here on a meeting of participants in four Indigenous community-university partnerships pursuing research on precision medicine. The goal of the meeting was to define values and practices that strengthen opportunities for genetic research. The group accorded the highest priority to developing trusting relationships, ensuring respect for Indigenous com-munity authority, and pursuing research that has the potential to lead to community benefit. Supporting priorities included incorporation of Indigenous expertise in research planning, transparent communication, and development of community capacity, including capacity to participate in formulating research questions, informing research methodology, and lead-ing research projects. Participants also noted the importance of attention to social determinants of health so that genetic contributors to health are evaluated in the appropriate context.

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