Open AccessRecommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine
Author(s) -
Dana Mowls Carroll,
Carol Hernandez,
Greg Braaten,
Ellen Meier,
Pamala A. Jacobson,
Abbie Begnaud,
Erin McGonagle,
Linda Bane Frizzell,
Dorothy K. Hatsukami
Publication year - 2021
Publication title -
personalized medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.489
H-Index - 31
eISSN - 1744-828X
pISSN - 1741-0541
DOI - 10.2217/pme-2020-0130
Subject(s) - distrust , representation (politics) , community based participatory research , tribe , personalized medicine , diversity (politics) , participatory action research , medicine , engineering ethics , data science , political science , computer science , sociology , bioinformatics , engineering , biology , politics , anthropology , law
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.