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Towards the implementation of Indigenous data governance in neurogenomics research

Nature Neuroscience volume 28, pages 2171–2174 (2025)Cite this article

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The promise of genomics-focused neuroscience to improve health outcomes for Indigenous Peoples depends on ensuring more equitable data relationships though culturally appropriate data governance and the technical infrastructure to enable its implementation. Although ethical frameworks and legal policy mechanisms affirm Indigenous rights, there is a persistent gap in translating these commitments into practice. Here we discuss how embedding Indigenous data governance across research infrastructures and data ecosystems is needed to strengthen the field’s capacity to deliver beneficial outcomes for all.

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Acknowledgements

The authors acknowledge the members of global Indigenous data sovereignty networks, various Indigenous Peoples and allies worldwide who provided fruitful conversation and feedback. We express gratitude to those who continue to advocate for Indigenous control of Indigenous data.

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Authors and Affiliations

  1. The School of Biological Sciences, University of Auckland, Auckland, New Zealand

    Nicole Edwards

  2. Native American Center for Health Professions, University of Wisconsin-Madison School of Medicine and Public Health, Madison, WI, USA

    Lauren W. Yowelunh McLester-Davis

  3. Department of Pediatrics, Division of Oncology, Children’s Hospital of Philadelphia, University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA, USA

    Cassie Kline

  4. National Centre for Indigenous Genomics, John Curtin School of Medical Research, Australian National University, Canberra, Australian Capital Territory, Australia

    Alex Brown

  5. Indigenous Genomics, The Kids Research Institute of Australia, Adelaide, South Australia, Australia

    Alex Brown

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

    Nadine R. Caron

  7. First Nations Health Authority Chair in Cancer and Wellness, UBC Health and Faculty of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada

    Nadine R. Caron

  8. Department of Anatomy, University of Otago, Dunedin, New Zealand

    Louise C. Parr-Brownlie

Authors
  1. Nicole Edwards
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  2. Lauren W. Yowelunh McLester-Davis
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  3. Cassie Kline
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  4. Alex Brown
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  5. Nadine R. Caron
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  6. Louise C. Parr-Brownlie
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Corresponding author

Correspondence to Nicole Edwards.

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Competing interests

A.B. provides scientific and operational leadership for ALIGN. N.R.C. is a co-project leader for the Silent Genomes project. N.E. is an Executive Committee (Te Pokapū) member of Te Mana Raraunga — the Māori Data Sovereignty Network, which advocates for the IDSov and IDGov principles outlined in the article. The other authors declare no competing interests.

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Edwards, N., McLester-Davis, L.W.Y., Kline, C. et al. Towards the implementation of Indigenous data governance in neurogenomics research. Nat Neurosci 28, 2171–2174 (2025). https://doi.org/10.1038/s41593-025-02070-6

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