Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers

Vanessa Y Hiratsuka,David R Wilson,Denise A Dillard,Katrina G Claw ,Michael Hahn ,Jaedon P Avey ,Francine C Gachupin,Sonya Jooma,Sara Chandros Hull,Lucia A Hindorff ,Jennifer L Troyer ,Susan Brown Trinidad ,Juliana Blome,Armen A Ghazarian ,Elizabeth D Ferucci,Vence L Bonham,Andrea C Beckel-Mitchener ,R Brian Woodbury,Hina Walajahi

doi:10.1038/s41436-020-0926-y

Abstract

Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.

Highlights

Meaningful engagement of Alaska Native (AN) tribes and the tribal health organizations (THOs) is essential to the conduct of socially responsible and ethical health research
As AN tribes, THOs, and federal partners continue to pursue opportunities to engage AN people in research, the stories shared at the Alaska Native Genomic Workshop highlighted THO research review processes, issues for discussion in the development of data-sharing agreements with federal partners, and areas to explore for additional grant funding to
AN participation in genomics and other biomedical research is predicated on effectively incorporating AN community-level review

Summary

REVIEW ARTICLE

PhD1, The Alaska Native Genomics Research Workshop Group, Jaedon P. Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. The National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.

INTRODUCTION

Small group discussion questions

Tribal Health Consortium

COMMON THEMES WITH PREVIOUS AIAN RESEARCH

The authors thank all of the participants of the Alaska Native