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

• Published in: Genetics in medicine Vol. 22; no. 12; pp. 1935 - 1943
• Main Authors: Hiratsuka, Vanessa Y., Hahn, Michael J., Woodbury, R. Brian, Hull, Sara Chandros, Wilson, David R., Bonham, Vence L., Dillard, Denise A., Avey, Jaedon P., Beckel-Mitchener, Andrea C., Blome, Juliana, Claw, Katrina, Ferucci, Elizabeth D., Gachupin, Francine C., Ghazarian, Armen, Hindorff, Lucia, Jooma, Sonya, Trinidad, Susan B., Troyer, Jennifer, Walajahi, Hina
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.12.2020; Elsevier Limited
• Subjects: Alaska Natives - genetics; Biomedical and Life Sciences; Biomedical Research; Biomedicine; Genomics; Human Genetics; Humans; Indians, North American; Information Dissemination; Laboratory Medicine; Review; Review Article; Alaska; trust; US National Institutes of Health; social responsibility; Alaska Natives, North American; ethics
• ISSN: 1098-3600; 1530-0366
• DOI: 10.1038/s41436-020-0926-y

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.