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Overvaluing individual consent ignores risks to tribal participants

Nature Reviews Genetics volume 20, pages 497–498 (2019)Cite this article

Subjects

Genomic studies often rely on individual-based consent approaches for tribal members residing outside of their communities. This consent model fails to acknowledge the risks to small groups such as tribes, which can implicate the community as a whole.

Guidelines for engaging Indigenous people1 in genomics are based on community-based participatory research (CBPR) models that are consistent with Indigenous communitarian ethics2. However, ‘big data’ studies consistently rely on individual-based consent approaches for tribal members residing outside of their communities, which can circumvent CBPR and bypass tribal sovereignty.

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References

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Authors and Affiliations

  1. Vanderbilt University, Nashville, TN, USA

    Krystal S. Tsosie

  2. Department of Environmental Health and Engineering, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA

    Joseph M. Yracheta

  3. University of London, London, UK

    Donna Dickenson

Authors
  1. Krystal S. Tsosie
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  2. Joseph M. Yracheta
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  3. Donna Dickenson
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Contributions

The authors contributed equally to all aspects of this manuscript.

Corresponding author

Correspondence to Krystal S. Tsosie.

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Competing interests

K.S.T. and J.M.Y. serve as voluntary board members of a non-profit 501(c)3 Indigenous biobank initiative in the United States. D.D. declares no competing interests.

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Tsosie, K.S., Yracheta, J.M. & Dickenson, D. Overvaluing individual consent ignores risks to tribal participants. Nat Rev Genet 20, 497–498 (2019). https://doi.org/10.1038/s41576-019-0161-z

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