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Ethics

The value of consent for biobanking

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.

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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

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Correspondence to Elizabeth Bromley.

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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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