Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine

Dana M. Carroll; Carol Hernandez; Greg Braaten; Ellen Meier; Pamala Jacobson; Abbie Begnaud; Erin McGonagle; Linda Bane Frizzell; Dorothy K Hatsukami

doi:10.2217/pme-2020-0130

Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine

Dana M. Carroll, Carol Hernandez, Greg Braaten, Ellen Meier, Pamala Jacobson, Abbie Begnaud, Erin McGonagle, Linda Bane Frizzell, Dorothy K Hatsukami

Research output: Contribution to journal › Article › peer-review

5 Scopus citations

Abstract

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.

Original language	English (US)
Pages (from-to)	67-74
Number of pages	8
Journal	Personalized Medicine
Volume	18
Issue number	1
DOIs	https://doi.org/10.2217/pme-2020-0130
State	Published - Jan 1 2021

Bibliographical note

Funding 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.

Publisher Copyright:
© 2021

Keywords

American Indians/Alaska Natives
community-based participatory research
ethical issues
genetics
health disparities
personalized medicine
racial/ethnic representation

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abstract = "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.",

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note = "Funding 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{\textquoteright}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. Publisher Copyright: {\textcopyright} 2021 ",

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Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine

Abstract

Bibliographical note

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