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

Nature Reviews Genetics volume 21, pages 377–384 (2020)Cite this article

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Abstract

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

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Acknowledgements

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

  1. Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand

    Maui Hudson

  2. Genomics Aotearoa, University of Otago, Dunedin, New Zealand

    Maui Hudson, Phil Wilcox, Ben Te Aika & Peter K. Dearden

  3. Institute for Society and Genetics, University of California, Los Angeles, CA, USA

    Nanibaa’ A. Garrison

  4. Faculty of Law, University of Waikato, Hamilton, New Zealand

    Rogena Sterling

  5. Centre for Excellence in Indigenous Health, University of British Columbia, Vancouver, BC, Canada

    Nadine R. Caron

  6. British Columbia Cancer, Michael Smith Genome Sciences Centre, Vancouver, BC, Canada

    Nadine R. Caron

  7. Department of Global Health, University of California, San Diego, CA, USA

    Keolu Fox

  8. Johns-Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Joseph Yracheta

  9. Native BioData Consortium, Eagle Butte, SD, USA

    Joseph Yracheta

  10. Department of Anthropology, New York University, New York, NY, USA

    Jane Anderson

  11. Department of Mathematics and Statistics, University of Otago, Dunedin, New Zealand

    Phil Wilcox

  12. Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada

    Laura Arbour & Leah L. Ballantyne

  13. Aboriginal Health Equity, South Australian Medical and Health Research Institute, Adelaide, SA, Australia

    Alex Brown

  14. University of Adelaide, Adelaide, SA, Australia

    Alex Brown

  15. Clinical Transformation, Hawaii Permanente Medical Group, Honolulu, HI, USA

    Maile Taualii

  16. National Institute of Demographic and Economic Analysis, University of Waikato, Hamilton, New Zealand

    Tahu Kukutai

  17. Center for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Centre, Buffalo, NY, USA

    Rodney Haring

  18. Faculty of Medicine and Health Sciences, University of Western Australia, Perth, WA, Australia

    Gareth S. Baynam

  19. Biochemistry Department, University of Otago, Dunedin, New Zealand

    Peter K. Dearden

  20. The New Zealand Institute for Plant and Food Research Limited (Plant & Food Research), Palmerston North, New Zealand

    David Chagné

  21. Genomics Aotearoa, Palmerston North, New Zealand

    David Chagné

  22. Department of Anthropology, Carl R. Woese Institute for Genomic Biology, University of Illinois, Urbana, IL, USA

    Ripan S. Malhi

  23. Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA

    Ibrahim Garba, Dominique David-Chavez, Andrew Martinez & Stephanie Russo Carroll

  24. Computational Biology Division, University of Cape Town, Cape Town, South Africa

    Nicki Tiffin

  25. Wellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa

    Nicki Tiffin

  26. Centre for Infectious Disease Epidemiology Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa

    Nicki Tiffin

  27. Department of Anthropology, University of Connecticut, Storrs, CT, USA

    Deborah Bolnick

  28. Institute for Systems Genomics, University of Connecticut, Storrs, CT, USA

    Deborah Bolnick

  29. School of Biological Sciences, University of Canterbury, Christchurch, New Zealand

    Matthew Stott

  30. Manawaora, The Centre for Health, Tauranga, New Zealand

    Anna K. Rolleston

  31. Research School of Population Health, Australian National University, Canberra, ACT, Australia

    Ray Lovett

  32. Colorado State University, Fort Collins, CO, USA

    Dominique David-Chavez

  33. Department of Statistics, University of Auckland, Auckland, New Zealand

    Andrew Sporle

  34. School of Social Science, University of Tasmania, Hobart, TAS, Australia

    Maggie Walter

  35. Maiam nayri Wingara (Australian Indigenous Data Sovereignty Collective), Hobart, TAS, Australia

    Maggie Walter

  36. Global Indigenous Data Alliance, Oñati, Spain

    Maggie Walter

  37. Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada

    Jeff Reading

  38. Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, USA

    Stephanie Russo Carroll

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  1. Maui Hudson
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  2. Nanibaa’ A. Garrison
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  3. Rogena Sterling
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  4. Nadine R. Caron
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  5. Keolu Fox
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  6. Joseph Yracheta
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  7. Jane Anderson
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  8. Phil Wilcox
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  9. Laura Arbour
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  10. Alex Brown
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  17. David Chagné
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  18. Ripan S. Malhi
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  19. Ibrahim Garba
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  20. Nicki Tiffin
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  21. Deborah Bolnick
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  29. Maggie Walter
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  30. Jeff Reading
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  31. Stephanie Russo Carroll
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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.

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Correspondence to Maui Hudson.

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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.

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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). https://doi.org/10.1038/s41576-020-0228-x

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