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Cited by 34Ethics in Clinical ResearchIndigenous Health, Education, and RightsRace, Genetics, and Society

Alaska Native Genomic Research: Perspectives from Alaska Native Leaders, Federal Staff, and Biomedical Researchers

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Hiratsuka, Vanessa Y., Hahn, Michael J., Woodbury, R. Brian, Hull, Sara Chandros, Wilson, David R., Bonham, Vence L., Dillard, Denise A., Avey, Jaedon P. +23 more·2020·Genetics in Medicine
DOI 10.1038/s41436-020-0926-yPMC PMC7708301
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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.

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  • The NIH Genomic Data Sharing policy allows a data sharing exception that recognizes some tribal laws may not permit broad data sharing.

    “However, the policy allows a data sharing exception that recognizes some tribal laws may not permit broad data sharing (Hiratsuka et al., 2020).”

    From Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes (2022) · cites this paper as Hiratsuka et al., 2020

    The Data sharing section (page unavailable) says the NIH Genomic Data Sharing Policy includes exceptions that can be tailored to Alaska Native communities’ data-sharing decisions. It does not say that these exceptions specifically recognize tribal laws that prohibit broad data sharing. (LLM, conf=0.85)

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Research works printed but not linked: 28

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Authors
Hiratsuka, V. Y., Hahn, M. J., Woodbury, R. B., Hull, S. C., Wilson, D. R., Bonham, V. L., Dillard, D. A., Avey, J. P., Beckel-Mitchener, A. C., Blome, J., Claw, K., Ferucci, E. D., Gachupin, F. C., Ghazarian, A., Hindorff, L., Jooma, S., Trinidad, S. B., Troyer, J., Walajahi, H., Avey, J. P., Beckel-Mitchener, A. C., Blome, J., Claw, K., Ferucci, E. D., Gachupin, F. C., Ghazarian, A., Hindorff, L., Jooma, S., Trinidad, S. B., Troyer, J., & Walajahi, H.
Affiliations
  • Southcentral Foundation (US)
  • National Institutes of Health (US)
Corresponding author
Hiratsuka, Vanessa Y.
ORCID
Venue
Genetics in Medicine
Publisher
Elsevier BV
Published
2020-12
Volume
22
Issue
12
Pages
1935-1943
ISSN
1098-3600 (ISSN-L)
DOI
10.1038/s41436-020-0926-y
PMC
PMC7708301
OpenAlex
W3080185716
Cited by
34
References
1
Citations by year
2026: 2 · 2025: 2 · 2024: 7 · 2023: 12 · 2022: 7 · 2021: 4
FWCI
0.96
Type
journal article
Language
en
Open access
Licence
Locations
  • Genetics in Medicine (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Funders
  • National Human Genome Research Institute (RM1HG009042, R01HG009500)
  • National Institute of General Medical Sciences (S06GM123545)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Social Sciences › Health › Indigenous Health, Education, and Rights
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
Keywords
Alaska Natives, genomic research, community participation, research ethics, mistrust of research, data ownership, genetic privacy, data sharing, research collaboration, National Human Genome Research Institute
MeSH terms
Alaskan Natives, Alaska Natives, Humans, Indians, North American, Genomics, Information Dissemination, Biomedical Research

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