Skip to main content

Thank you for visiting nature.com. 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.

  • News & Views
  • Published:

Ethics

The value of consent for biobanking

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

Subjects

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.

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

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

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

References

  1. Reardon, J. Race to the Finish: Identity and Governance in an Age of Genomics (Princeton Univ. Press, 2005).

  2. Benjamin, R. Sci. Tech. Hum. Values 41, 967–990 (2016).

    Article  Google Scholar 

  3. Zietsch, B. P. et al. Nat. Hum. Behav. https://doi.org/10.1038/s41562-021-01164-y (2021).

  4. Hallinan, D. Life Sci. Soc. Policy 16, 1 (2020).

    Article  Google Scholar 

  5. Mikkelsen, R. B., Gjerris, M., Waldemar, G. & Sandoe, P. BMC Med. Ethics 20, 71 (2019).

    Article  Google Scholar 

  6. Fisher, C. B. & Layman, D. M. Prev. Sci. 19, 871–879 (2018).

    Article  Google Scholar 

  7. Lynch, H. F., Wolf, L. E. & Barnes, M. J. Law Med. Ethics 47, 213–231 (2019).

    Article  Google Scholar 

  8. Bromley, E., Mendoza-Graf, A., Berry, S., Nebeker, C. & Khodyakov, D. J. Law Med. Ethics 48, 172–182 (2020).

    Article  Google Scholar 

  9. Beskow, L. M. & Weinfurt, K. P. Am. J. Bioethics 19, 6–18 (2019).

    Article  Google Scholar 

  10. Maloy, J. W. & Bass, P. F. Ochsner J. 20, 81–86 (2020).

    Article  Google Scholar 

  11. Consent Form: UK Biobank, Version: 20061124 AMENDMENT ONE FINAL. UK Biobank https://www.ukbiobank.ac.uk/consent (2006; updated 2020).

  12. Add Health. Wave IV Data Documentation (Carolina Population Center, 2009); https://addhealth.cpc.unc.edu/wp-content/uploads/docs/faq/Wave%20IV%20Data%20Documentation.pdf

  13. LGBTI rights: mapping anti-gay laws in Africa. Amnesty International UK https://www.amnesty.org.uk/lgbti-lgbt-gay-human-rights-law-africa-uganda-kenya-nigeria-cameroon (2018).

  14. Am. J. Med. Genet. 152A, fm ix (2010).

  15. TallBear, K. J. Law Med. Ethics 35, 412–424 (2007).

    Article  Google Scholar 

Download references

Author information

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
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Dmitry Khodyakov
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Elizabeth Bromley.

Ethics declarations

Competing interests

The authors declare no competing interests.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41562-021-01163-z

This article is cited by

Search

Advanced search

Quick links

Nature Briefing: Translational Research

Sign up for the Nature Briefing: Translational Research newsletter — top stories in biotechnology, drug discovery and pharma.

Get what matters in translational research, free to your inbox weekly. Sign up for Nature Briefing: Translational Research