Skip to main content

Thank you for visiting You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data


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.

This is a preview of subscription content, access via your institution

Relevant articles

Open Access articles citing this article.

Access options

Rent or buy this article

Prices vary by article type



Prices may be subject to local taxes which are calculated during checkout

Fig. 1: Principles proposed to support greater Indigenous diversity and inclusion in genomic research.


  1. Claw, K. G. et al. A framework for enhancing ethical genomic research with communities. Nat. Commun. 9, 2957 (2018).

    PubMed  PubMed Central  Google Scholar 

  2. Amann, R. I. et al. Toward unrestricted use of public genomic data. Science 363, 350–352 (2019).

    CAS  PubMed  Google Scholar 

  3. Salter, B. & Salter, C. Controlling new knowledge: genomic science, governance and the politics of bioinformatics. Soc. Stud. Sci. 47, 263–287 (2017).

    PubMed  PubMed Central  Google Scholar 

  4. David-Chavez, D. M. A Guiding Model For Decolonizing Environmental Science Research and Restoring Relational Accountability with Indigenous Communities. Thesis Colorado State Univ. (2019).

  5. McInnes, R. R. 2010 presidential address: culture: the silent language geneticists must learn — genetic research with indigenous populations. Am. J. Hum. Genet. 88, 254–261 (2011).

    CAS  PubMed  PubMed Central  Google Scholar 

  6. Rainie, S. C. et al. in The State of Open Data: Histories and Horizons (eds Davies, T., Walker, S., Rubinstein, M. & Perini, F.) 300–319 (African Minds and International Development Research Centre, 2019).

  7. Stephens, C., Porter, J., Nettleton, C. & Willis, R. Disappearing, displaced, and undervalued: a call to action for Indigenous health worldwide. Lancet 367, 2019–2028 (2006).

    PubMed  Google Scholar 

  8. Garrison, N. A. et al. Genomic research through an indigenous lens: understanding the expectations. Annu. Rev. Genom. Hum. Genet. 20, 495–517 (2019).

    CAS  Google Scholar 

  9. Cohn, E. G., Husamudeen, M., Larson, E. L. & Williams, J. K. Increasing participation in genomic research and biobanking through community-based capacity building. J. Genet. Counseling 24, 491–502 (2015).

    Google Scholar 

  10. Scherr, C. L., Ramesh, S., Marshall-Fricker, C. & Perera, M. A. A review of African Americans’ beliefs and attitudes about genomic studies: opportunities message design. Front. Genet. 10, 548 (2019).

    PubMed  PubMed Central  Google Scholar 

  11. Bonevski, B. et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med. Res. Methodol. 14, 42 (2014).

    PubMed  PubMed Central  Google Scholar 

  12. Martin, A. R. et al. Clinical use of current polygenic risk scores may exacerbate health disparities. Nat. Genet. 51, 584–591 (2019).

    CAS  PubMed  PubMed Central  Google Scholar 

  13. Geary, J., Jardine, C. J., Guebert, J. & Bubela, T. Access and benefits sharing of genetic resources and associated traditional knowledge in northern Canada: understanding the legal environment and creating effective research agreements. Int. J. Circumpolar Health 72, 1–9 (2013).

    Google Scholar 

  14. Jacobs, B. et al. Bridging the divide between genomic science and indigenous peoples. J. Law, Med. Ethics 38, 684–696 (2010).

    Google Scholar 

  15. The National Congress of American Indians (NCAI). Calling upon the National Institutes of Health to consult with tribal nations and establish policies and guidance for tribal oversight of data on tribal citizens enrolled in the All of Us research program. NCAI (2019).

  16. Porteri, C., Togni, E. & Pasqualetti, P. The policies of ethics committees in the management of biobanks used for research: an Italian survey. Eur. J. Hum. Genet. 22, 260–265 (2014).

    PubMed  Google Scholar 

  17. Joly, Y., Dyke, S. O., Cheung, W. A., Rothstein, M. A. & Pastinen, T. Risk of re-identification of epigenetic methylation data: a more nuanced response is needed. Clin. Epigenetics 7, 45 (2015).

    PubMed  PubMed Central  Google Scholar 

  18. Mills, M. C. & Rahal, C. A scientometric review of genome-wide association studies. Commun. Biol. 2, 9 (2019).

    PubMed  PubMed Central  Google Scholar 

  19. Bentley, A. R., Callier, S. & Rotimi, C. N. Diversity and inclusion in genomic research: why the uneven progress? J. Community Genet. 8, 255–266 (2017).

    PubMed  PubMed Central  Google Scholar 

  20. Kraft, S. A. et al. Beyond consent: building trusting relationships with diverse populations in precision medicine research. Am. J. Bioeth. 18, 3–20 (2018).

    PubMed  PubMed Central  Google Scholar 

  21. Jackson, L., Kuhlman, C., Jackson, F. & Fox, P. K. Including vulnerable populations in the assessment of data from vulnerable populations. Front. Big Data 2, 19 (2019).

    PubMed  PubMed Central  Google Scholar 

  22. Garrison, N. A. Genomic justice for Native Americans: impact of the Havasupai case on genetic research. Sci. Technol. Human Values 38, 201–223 (2013).

    PubMed  Google Scholar 

  23. Kowal, E. E. in International Encyclopedia of the Social & Behavioral Sciences (ed. Wright, J. D.) 962–968 (Elsevier, 2015).

  24. Hudson, M. et al. Key informant views on biobanking and genomic research with Māori. N. Z. Med. J. 129, 29–42 (2016).

    PubMed  Google Scholar 

  25. Prictor, M., Teare, H. J. A. & Kaye, J. Equitable participation in biobanks: the risks and benefits of a ‘Dynamic Consent’ approach. Front. Public Health 6, 253 (2018).

    PubMed  PubMed Central  Google Scholar 

  26. Aramoana, J. & Koea, J. An integrative review of the barriers to indigenous peoples participation in biobanking and genomic research. J. Glob. Oncol. 5, 1–9 (2019).

    Google Scholar 

  27. TallBear, K. Native American DNA: Tribal Belonging and the False Promise of Genetic Science (Univ. of Minnesota, 2013).

  28. Blanchard, J. W., Outram, S., Tallbull, G. & Royal, C. D. M. ‘We don’t need a swab in our mouth to prove who we are’: identity, resistance, and adaptation of genetic ancestry testing among Native American communities. Curr. Anthropol. 60, 637–655 (2019).

    PubMed  PubMed Central  Google Scholar 

  29. Woodbury, R. B., Beans, J. A., Hiratsuka, V. Y. & Burke, W. Data management in health-related research involving indigenous communities in the United States and Canada: a scoping review. Front. Genet. 10, 942 (2019).

    PubMed  PubMed Central  Google Scholar 

  30. Beans, J. A. et al. Community protections in American Indian and Alaska Native participatory research — a scoping review. Soc. Sci. 8, 127 (2019).

    Google Scholar 

  31. Woodbury, R. B., Ketchum, S., Hiratsuka, V. Y. & Spicer, P. Health-related participatory research in American Indian and Alaska Native communities: a scoping review. Int. J. Environ. Res. Public Health 16, 2969 (2019).

    PubMed Central  Google Scholar 

  32. Hanna, P. & Vanclay, F. Human rights, Indigenous peoples and the concept of free, prior and informed consent. Impact Assess. Proj. Apprais. 31, 146–157 (2013).

    Google Scholar 

  33. Barelli, M. Free, prior and informed consent in the aftermath of the UN declaration on the rights of Indigenous peoples: developments and challenges ahead. Int. J. Hum. Rights 16, 1–24 (2012).

    Google Scholar 

  34. Wynberg, R. & Laird, S. in Indigenous Peoples, Consent and Benefit Sharing: Lessons from the San-Hoodia Case (eds Wynberg, R., Schroeder, D. & Chennells, R.) 69–86 (Springer, 2009).

  35. Jonas, H., Bavikatte, K. & Shrumm, H. Community protocols and access and benefit sharing. Asian Biotechnol. Dev. Rev. 12, 49–76 (2010).

    Google Scholar 

  36. United Nations. United Nations Declaration on the Rights of Indigenous Peoples (A/RES/61/295) (United Nations, 2007).

  37. Wynberg, R., Schroeder, D., & Chennells R. Indigenous Peoples, Consent and Benefit Sharing: Lessons from the San-Hoodia Case (Springer, 2009).

  38. Karger, E. Study on the use of Digital Sequence Information on Genetic Resources in Germany (Bundesamt für Naturschutz (BfN) (Federal Agency for Nature Conservation), 2018).

  39. Tsosie, K. S., Yracheta, J. M. & Dickenson, D. Overvaluing individual consent ignores risks to tribal participants. Nat. Rev. Genet. 20, 497–498 (2019).

    CAS  PubMed  PubMed Central  Google Scholar 

  40. Mead, A. & Ratuva, S. Pacific Genes & Life Patents: Pacific Indigenous Experiences & Analysis of the Commodification & Ownership of Life (Earth Llamado de la Tierra and the United Nations University of Advanced Studies, 2007).

  41. Taylor, J. & Kukutai, T. Indigenous Data Sovereignty: Toward an Agenda (ANU, 2016).

  42. Greely, H. T. Genes, patents, and indigenous peoples: biomedical research and Indigenous peoples’ rights. Cultural Survival Quarterly Magazine (1996).

  43. Malerba, L. et al. Considerations for meaningful collaboration with tribal populations. The Tribal Collaboration Working Group Report to the All of Us Research Program Advisory Panel. NIH (2018).

  44. Henare, K. L. et al. Mapping a route to Indigenous engagement in cancer genomic research. Lancet Oncol. 20, e327–e335 (2019).

    PubMed  Google Scholar 

  45. Arbour, L. & Cook, D. DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities. Community Genet. 9, 153–160 (2006).

    PubMed  Google Scholar 

  46. Doris Schroeder, et al. Ethics Dumping: Case Studies from North–South Research Collaborations (Springer International, 2018).

  47. Tiffin, N. Tiered informed consent: respecting autonomy, agency and individuality in Africa. BMJ Glob. Health 3, e001249 (2018).

    PubMed  PubMed Central  Google Scholar 

  48. Budin-Ljøsne, I. et al. Dynamic consent: a potential solution to some of the challenges of modern biomedical research. BMC Med. Ethics 18, 4 (2017).

    PubMed  PubMed Central  Google Scholar 

  49. Walter, M. & Lovett, R., Bodkin Andrews, G. & Lee, V. Indigenous data sovereignty. Briefing paper: 2018. Australian Indigenous Governance Institute (2018).

  50. Te Mana Raraunga. Principles of Māori data sovereignty. Te Mana Raraunga (2018).

  51. Hudson, M., Milne, M., Reynolds, P., Russell, K. & Smith, B. Te Ara Tika: Guidelines for Māori Research Ethics: A Framework for Researchers and Ethics Committee Members (Health Research Council of New Zealand on behalf of the Pūtaiora Writing Group, 2010).

  52. Johnson, S. B., Slade, I., Giubilini, A. & Graham, M. Rethinking the ethical principles of genomic medicine services. Eur. J. Hum. Genet. 28, 147–154 (2020).

    PubMed  Google Scholar 

  53. Jooma, S., Hahn, M. J., Hindorff, L. A. & Bonham, V. L. Defining and achieving health equity in genomic medicine. Ethnicity Dis. 29, 173–178 (2019).

    Google Scholar 

  54. Canadian Institutes of Health Research. Guide to knowledge translation planning at CIHR: integrated and end-of-grant approaches. Canadian Institutes of Health Research (2012).

  55. Gagliardi, A. R., Berta, W., Kothari, A., Boyko, J. & Urquhart, R. Integrated knowledge translation (IKT) in health care: a scoping review. Implement. Sci. 11, 38 (2015).

    Google Scholar 

  56. Kothari, A. & Sibbald, S. L. Using complexity to simplify knowledge translation comment on ‘using complexity and network concepts to inform healthcare knowledge translation’. Int. J. Health Policy Manag. 7, 563–565 (2017).

    PubMed Central  Google Scholar 

  57. Taylor, N. et al. A transformative translational change programme to introduce genomics into healthcare: a complexity and implementation science study protocol. BMJ Open 9, e024681 (2019).

    PubMed  PubMed Central  Google Scholar 

  58. Tauali’i, M. et al. Native Hawaiian views on biobanking. J. Canc Educ. 29, 570–576 (2014).

    Google Scholar 

  59. James, R. et al. Exploring pathways to trust: a tribal perspective on data sharing. Genet. Med. 16, 820–826 (2014).

    PubMed  PubMed Central  Google Scholar 

  60. Anderson, J. & Bowrey, K. The politics of global information sharing: whose cultural agendas are being advanced? Soc. Leg. Stud. 18, 479–504 (2009).

    Google Scholar 

  61. Merriman, T. & Cameron, V. Risk-taking: behind the warrior gene story. N. Z. Med. J. 120, U2440 (2007).

    PubMed  Google Scholar 

  62. Robertson, S. P. et al. Genomic medicine must reduce, not compound, health inequities: the case for hauora-enhancing genomic resources for New Zealand. N. Z. Med. J. 131, 81–89 (2018).

    PubMed  Google Scholar 

  63. Wellcome Trust. Sharing Data from Large-scale Biological Research Projects: A System of Tripartite Responsibility (Wellcome Trust, 2003).

  64. European Union. EU data protection rules. European Commission (2019).

  65. Wang, S. et al. A community effort to protect genomic data sharing, collaboration and outsourcing. NPJ Genom. Med. 2, 33 (2017).

    PubMed  PubMed Central  Google Scholar 

  66. Berger, B. & Cho, H. Emerging technologies towards enhancing privacy in genomic data sharing. Genome Biol. 20, 128 (2019).

    PubMed  PubMed Central  Google Scholar 

  67. Chen, I.-M. A. et al. IMG/M: integrated genome and metagenome comparative data analysis system. Nucleic Acids Res. 45, D507–D516 (2017).

    CAS  PubMed  Google Scholar 

  68. Takashima, K. et al. Ethical concerns on sharing genomic data including patients’ family members. BMC Med. Ethics 19, 61 (2018).

    PubMed  PubMed Central  Google Scholar 

  69. Hudson, M. et al. He Tangata Kei Tua — Guidelines for Biobanking with Māori (Te Mata Hautū Taketake — Māori & Indigenous Governance Centre, Univ. of Waikato, 2016).

  70. Beaton, A. et al. Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities. Genet. Med. 19, 345–351 (2017).

    PubMed  Google Scholar 

  71. Kaye, J. The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 13, 415–431 (2012).

    CAS  PubMed  PubMed Central  Google Scholar 

  72. Hudson, M. et al. (C)ELSI-us: reducing friction with Indigenous communities in genomic research: world anthropologies. Am. Anthropol. 120, 330–332 (2018).

    Google Scholar 

  73. Hudson, M. et al. Te Mata Ira: guidelines for genomic research with Māori. Te Mata Hautū Taketake — Māori & Indigenous Governance Centre (2016).

  74. Yakubu, A. et al. Model framework for governance of genomic research and biobanking in Africa — a content description. AAS Open Res. 1, 13 (2018).

    PubMed  PubMed Central  Google Scholar 

  75. The South Australian Health and Medical Research Institute. South Australian Aboriginal Health Research accord: companion document. SAHMRI Research (2014).

  76. Schuster, S. C. et al. Complete Khoisan and Bantu genomes from Southern Africa. Nature 463, 943–947 (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  77. South African San Institute. San Code of Research Ethics. South African San Institute (2017).

  78. Nordling, L. San people of Africa draft code of ethics for researchers. Science (2017).

    Article  PubMed  Google Scholar 

  79. Callaway, E. South Africa’s San people issue ethics code to scientists. Nature 543, 475–476 (2017).

    CAS  PubMed  Google Scholar 

  80. Stokstad, E. Major U.K. genetics lab accused of misusing African DNA. Science (2019).

  81. Research Data Alliance. International Indigenous Data Sovereignty IG. RDA (2019).

  82. Wilkinson, M. D. et al. The FAIR guiding principles for scientific data management and stewardship. Sci. Data 3, 160018 (2016).

    PubMed  PubMed Central  Google Scholar 

  83. Global Indigenous Data Alliance. CARE principles for Indigenous data governance. GIDA (2019).

  84. Ruckstuhl, K. et al. Recognising and valuing Māori innovation in the high-tech sector: a capacity approach. J. R. Soc. N. Z. 49, 72–88 (2019).

    Google Scholar 

  85. BC Children’s Hospital Research Institute. Silent Genomes Project. BCCHR (2019).

  86. Genomics Aotearoa. Aotearoa New Zealand genomic variome. Genomica Aotearoa (2019).

  87. The South Australian Health and Medical Research Institute. Overview. SAHMRI Research (2019).

  88. SPHERE Stanford Precision Health for Ethnic and Racial Equity. BRAICELET: Bio-repository for American Indian capacity, education, law, economics and technology. Stanford Medicine (2019).

  89. Tiffin, N. Potential risks and solutions for sharing genome summary data from African populations. BMC Med. Genomics 12, 152 (2019).

    PubMed  PubMed Central  Google Scholar 

  90. Chagné, D. et al. A high density linkage map and quantitative trait loci for tree growth for New Zealand mānuka (‘Leptospermum scoparium’). N. Z. J. Crop Hortic. Sci. 47, 261–272 (2019).

    Google Scholar 

  91. Genomics Aotearoa. Genomics Aotearoa is a collaborative research platform for genomics and bioinformatics. Genomics Aotearoa (2019).

  92. Morgan, E. R., Perry, N. B. & Chagné, D. Science at the intersection of cultures — Māori, Pākehā and mānuka. N. Z. J. Crop Hortic. Sci. 47, 225–232 (2019).

    CAS  Google Scholar 

  93. Anderson, J. Options for the future protection of GRTKTCES: the traditional knowledge license and labels initiative. J. World Intellect. Property Organ. 4, 66–75 (2012).

    Google Scholar 

  94. Anderson, J. & Christen, K. Traditional knowledge (TK) labels. Local Contexts (2019)

  95. Deck, J. et al. The Genomic Observatories Metadatabase (GeOMe): a new repository for field and sampling event metadata associated with genetic samples. PLOS Biol. 15, e20029252017 (2017).

    Google Scholar 

Download references


The authors acknowledge the learnings gained from the various Indigenous communities that they have partnered with in research. They also acknowledge the SING (Summer internship for INdigenous peoples in Genomics) networks, the Centre for the Ethics of Indigenous Genomics Research and the Indigenous Data Sovereignty networks, including the Global Indigenous Data Alliance, for the contributions they make towards generating new ideas and scholarship in this area.

Author information

Authors and Affiliations



R.S. researched data for the article. M.H., N.A.G., N.R.C., K.F., J.Y., J.A., P.W., L.A., A.B., M.T., T.K., R.H., B.T.A., G.S.B., P.K.D., D.C., R.S.M., I.G., N.T., D.B., M.S., A.K.R., L.L.B., R.L., D.D.-C., A.M., A.S., M.W., J.R. and S.R.C. substantially contributed to discussion of content. M.H., N.A.G., R.S. and S.R.C. wrote the manuscript. M.H., N.A.G., N.R.C., K.F., J.Y., J.A., P.W., L.A., A.B., M.T., T.K., R.H., B.T.A., G.S.B., P.K.D., D.C., R.S.M., I.G., N.T., M.S., A.K.R., L.L.B., R.L., D.D.-C., A.M., A.S., M.W., J.R. and S.R.C. contributed to reviewing/editing the manuscript before submission.

Corresponding author

Correspondence to Maui Hudson.

Ethics declarations

Competing interests

J.Y. and K.F. are executive board members of the Native BioData Consortium biorepository (501.C.3 non-profit). The other authors declare no competing interests.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Related link

Atlas of Living Australia:

Rights and permissions

Reprints and Permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hudson, M., Garrison, N.A., Sterling, R. et al. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nat Rev Genet 21, 377–384 (2020).

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI:

This article is cited by


Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing