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Ethics

The value of consent for biobanking

Nature Human Behaviour volume 5, pages 1125–1126 (2021)Cite this article

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Biobanks facilitate large-scale tests of hypotheses that may advance health, but whether biobanking participants adequately comprehend the potential uses of their data should concern researchers and the public. Consent matters because it provides a singular safeguard and a participatory mechanism to influence science’s production of new forms of power.

Participant consent is not a hurdle to clear before science begins. Knowledge production and forms of governance are best understood as co-produced: inextricably intertwined and emergent together1. The co-production of knowledge and power can be contrasted with an Enlightenment idea that knowledge is inherently liberatory, positioned opposite power and ‘speaking back’ to authority by unveiling reality. Science and power have always been coupled, and their forms grow together, not only in egregious cases like eugenics. All scientific innovation creates possibilities to advance well-being or entrench injustice. Today, scientific research, including genomics, may be the predominant mode through which we adopt new styles of thinking about ourselves and others. Consent is the contractual means by which an individual weighs in on the co-production of knowledge and power through acceptance or declination of the terms of the research that aims to study her2.

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Authors and Affiliations

  1. Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA

    Elizabeth Bromley

  2. RAND Corporation, Pardee RAND Graduate School, Santa Monica, CA, USA

    Dmitry Khodyakov

Authors
  1. Elizabeth Bromley
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  2. Dmitry Khodyakov
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Correspondence to Elizabeth Bromley.

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The authors declare no competing interests.

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Bromley, E., Khodyakov, D. The value of consent for biobanking. Nat Hum Behav 5, 1125–1126 (2021). https://doi.org/10.1038/s41562-021-01163-z

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