Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.
Bibliographical noteFunding Information:
Research reported in this publication was supported by the National Institute On Minority Health And Health Disparities of the NIH under award number K01MD014795 and by the NIH National Research Service Award (T32 DA007097) from the National Institute on Drug Abuse. Research was also supported by the Minnesota Cancer Clinical Trials Network; Minnesota’s Discovery, Research and InnoVation Economy; Forster Family Chair for Cancer Prevention and Control and University of Minnesota Grand Challenge Award for Advancing Health for Tailored Solutions through Precision Medicine. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.
- American Indians/Alaska Natives
- community-based participatory research
- ethical issues
- health disparities
- personalized medicine
- racial/ethnic representation