Rights, Interests and Expectations: Indigenous Perspectives on Unrestricted Access to Genomic Data
Open accessAbstract
Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
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The current structures for federal biomedical data governance, in particular the Common Rule, fail to align with the rights and interests of Indigenous nations and communities.
“The current structures that are in place for federal biomedical data governance, in particular the Common Rule (Office of Human Research Protections, 2017), fail to align with the rights and interests of Indigenous nations and communities (Hudson et al., 2020).”
From Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes (2022) · cites this paper as Hudson et al., 2020
Indigenous Peoples set agendas, determine methodologies, control processes, and direct outcomes of their research ecosystems.
“Indigenous Peoples set agendas, determine methodologies, control processes, and direct outcomes of their research ecosystems (Smith, 2012; Hudson et al., 2020).”
From Indigenous Peoples and research: self-determination in research governance (2023) · cites this paper as Hudson et al., 2020
Cites
The FAIR Guiding Principles for scientific data management and stewardship
Wilkinson, M. D., Dumontier, M., Aalbersberg, I. J., Appleton, G., Axton, M., Baak, A., Blomberg, N., Boiten, J.-W., da Silva Santos, L. B., Bourne, P. E., et al. (2016) · Scientific Data · doi:10.1038/sdata.2016.18 · Cited by 18,423 · see citing works
Clinical use of current polygenic risk scores may exacerbate health disparities
Martin, A. R., Kanai, M., Kamatani, Y., Okada, Y., Neale, B. M., & Daly, M. J. (2019) · Nature Genetics · doi:10.1038/s41588-019-0379-x · Cited by 2,831 · see citing works
The tension between data sharing and the protection of privacy in genomics research
Kaye, J. (2012) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-082410-101454 · Cited by 240 · see citing works
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Genome-wide association studies
Uffelmann, E., Huang, Q. Q., Munung, N. S., de Vries, J., Okada, Y., Martin, A. R., Martin, H. C., Lappalainen, T., & Posthuma, D. (2021) · Nature Reviews Methods Primers · doi:10.1038/s43586-021-00056-9 · Cited by 1,849 · see citing works
The Human Pangenome Project: a global resource to map genomic diversity
Wang, T., Antonacci-Fulton, L., Howe, K., Lawson, H. A., Lucas, J. K., Phillippy, A. M., Popejoy, A. B., Asri, M., Carson, C., Chaisson, M. J. P., et al. (2022) · Nature · doi:10.1038/s41586-022-04601-8 · Cited by 494 · see citing works
Self-citationIndigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty
Hudson, M., Carroll, S. R., Anderson, J., Blackwater, D., Cordova-Marks, F. M., Cummins, J., David-Chavez, D., Fernandez, A., Garba, I., Hiraldo, D., et al. (2023) · Frontiers in Research Metrics and Analytics · doi:10.3389/frma.2023.1173805 · Cited by 107 · see citing works
Self-citationCarroll, S. R., Garba, I., Plevel, R., Small-Rodriguez, D., Hiratsuka, V. Y., Hudson, M., & Garrison, N. A. (2022) · Frontiers in Genetics · doi:10.3389/fgene.2022.823309 · Cited by 95 · see citing works
Self-citationIndigenous Peoples and research: self-determination in research governance
Garba, I., Sterling, R., Plevel, R., Carson, W., Cordova-Marks, F. M., Cummins, J., Curley, C., David-Chavez, D., Fernandez, A., Hiraldo, D., et al. (2023) · Frontiers in Research Metrics and Analytics · doi:10.3389/frma.2023.1272318 · Cited by 56 · see citing works
Self-citationChapman, C. R., Quinn, G. P., Natri, H. M., Berrios, C., Dwyer, P., Owens, K., Heraty, S., & Caplan, A. L. (2025) · The American Journal of Bioethics · doi:10.1080/15265161.2023.2276161 · Cited by 31 · see citing works
Rana, V., & Azeez, G. K. (2025) · Journal of Higher Education Policy and Management · doi:10.1080/1360080x.2025.2469920 · Cited by 4 · see citing works
- Authors
- Hudson, M., Garrison, N. A., Sterling, R., Caron, N. R., Fox, K., Yracheta, J., Anderson, J., Wilcox, P., Arbour, L., Brown, A., Taualii, M., Kukutai, T., Haring, R., Te Aika, B., Baynam, G. S., Dearden, P. K., Chagné, D., Malhi, R. S., Garba, I., Tiffin, N., Bolnick, D., Stott, M., Rolleston, A. K., Ballantyne, L. L., Lovett, R., David-Chavez, D., Martinez, A., Sporle, A., Walter, M., Reading, J., & Carroll, S. R.
- Affiliations
- University of Waikato (NZ)
- University of California, Los Angeles (US)
- University of British Columbia (CA)
- University of California San Diego (US)
- Johns Hopkins University (US)
- New York University (US)
- University of Otago (NZ)
- South Australian Health and Medical Research Institute (AU)
- Hawaii Permanente Medical Group (US)
- Roswell Park Comprehensive Cancer Center (US)
- The University of Western Australia (AU)
- Plant & Food Research (NZ)
- University of Illinois Urbana-Champaign (US)
- University of Arizona (US)
- University of Cape Town (ZA)
- University of Connecticut (US)
- University of Canterbury (NZ)
- The Centre for Health (New Zealand) (NZ)
- University of Auckland (NZ)
- University of Tasmania (AU)
- Simon Fraser University (CA)
- Corresponding author
- Hudson, Maui
- ORCID
- Hudson, Maui
- Garrison, Nanibaa’ A.
- Sterling, Rogena
- Fox, Keolu
- Yracheta, Joseph
- Anderson, Jane
- Arbour, Laura
- Brown, Alex
- Taualii, Maile
- Kukutai, Tahu
- Haring, Rodney
- Baynam, Gareth S.
- Dearden, Peter K.
- Chagné, David
- Malhi, Ripan S.
- Garba, Ibrahim
- Tiffin, Nicki
- Bolnick, Deborah
- Stott, Matthew
- Rolleston, Anna K.
- David-Chavez, Dominique
- Martinez, Andrew
- Sporle, Andrew
- Walter, Maggie
- Carroll, Stephanie Russo
- Venue
- Nature Reviews Genetics
- Published
- 2020-04-06
- Volume
- 21
- Issue
- 6
- Pages
- 377-384
- ISSN
- 1471-0056 (ISSN-L)
- 1471-0064
- OpenAlex
- W3014681107
- Cited by
- 320
- References
- 3
- Citations by year
- 2026: 33 · 2025: 74 · 2024: 50 · 2023: 60 · 2022: 42 · 2021: 47 · 2020: 13
- FWCI
- 6.77
- Type
- journal article
- Language
- en
- Open access
- green
- figshare.com
- Locations
- Nature Reviews Genetics (publishedVersion)
- PubMed (publishedVersion)
- UTAS Research Repository (submittedVersion)
- UWA Profiles and Research Repository (UWA) (submittedVersion)
- Figshare (submittedVersion, cc-by)
- ANU Open Research (Australian National University) (submittedVersion)
- 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
- indigenous peoples, genomic data sharing, genetic resources, indigenous rights, open science, research ethics, community participation, trust, equity, accountability, data sovereignty
- MeSH terms
- Indigenous Peoples, Humans, Human Rights, Genome, Human, Access to Information, Genomics, Genetic Privacy, Information Dissemination, Genetic Research
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