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.

  • Comment
  • Published:

Hospitals should act now to notify patients about research use of their data and biospecimens

Nature Medicine volume 26, pages 306–308 (2020)Cite this article

Subjects

Private industry is increasingly soliciting hospitals to sell or share health data and biospecimens, but current laws offer more disclosure and consent protections for research participants than for patients receiving clinical care. Hospitals can offer more protections than required by law, however, and should move toward greater transparency with their patients about the research use of clinical health data and biospecimens to respect patients and avoid distrust.

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

Relevant articles

Open Access articles citing this article.

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. Copeland, R. & Needleman, S.E. The Wall Street Journal https://www.wsj.com/articles/behind-googles-project-nightingale-a-health-data-gold-mine-of-50-million-patients-11573571867 (13 November 2019).

  2. Feinberg, D. Google Blog https://blog.google/technology/health/google-health-provider-tools-launch/ (20 November 2020).

  3. Cohen, I. G. & Mello, M. M. J. Am. Med. Assoc. 322, 1141–1142 (2019).

    Article  Google Scholar 

  4. Price, W. N. II & Cohen, I. G. Nat. Med. 25, 37–43 (2019).

    Article  CAS  Google Scholar 

  5. Anonymous. The Guardian https://www.theguardian.com/commentisfree/2019/nov/14/im-the-google-whistleblower-the-medical-data-of-millions-of-americans-is-at-risk (14 November 2019).

  6. Farr, C. CNBC https://www.cnbc.com/2019/12/18/hospital-execs-say-theyre-flooded-with-requests-for-your-health-data.html (18 December 2019).

  7. Jones, J. H. Bad Blood: The Tuskegee Syphilis Experiment (The Free Press, New York, 1993).

  8. Department of Homeland Security. et al. Federal Policy for the Protection of Human Subjects. 82. Fed. Regist. 12, 7149–7274 (2017).

    Google Scholar 

  9. Skloot, R. The Immortal Life of Henrietta Lacks (Broadway Books, New York, 2010).

  10. Department of Homeland Security. et al. Federal Policy for the Protection of Human Subjects. 80. Fed. Regist. 173, 53933–54061 (2015).

    Google Scholar 

  11. Smith, J. D. et al. J. Clin. Oncol. 35, 1879–1883 (2017).

    Article  Google Scholar 

  12. Faden, R. R. et al. Hastings Cent. Rep. 43, S16–S27 (2013).

    Article  Google Scholar 

  13. Department of Health and Human Services. https://www.hhs.gov/hipaa/for-professionals/covered-entities/sample-business-associate-agreement-provisions/index.html (25 January 2015).

  14. 45 C.F.R. § 164.512 (2016).

  15. Spector-Bagdady, K. et al. J. Clin. Transl. Sci. https://doi.org/10.1017/cts.2019.308 (2019).

  16. Grady, C. et al. N. Engl. J. Med. 376, 856–867 (2017).

    Article  Google Scholar 

  17. Peppercorn, J. et al. Oncologist 24, 1–9 (2019).

    Article  Google Scholar 

  18. Spector-Bagdady, K. et al. Health Aff. (Millwood) 37, 1313–1320 (2018).

    Article  Google Scholar 

  19. Jagsi, R. et al. J. Clin. Oncol. 35, 2315–2323 (2017).

    Article  Google Scholar 

  20. Price, W. N. II, Kaminski, M. E., Minssen, T. & Spector-Bagdady, K. Science 363, 448–450 (2019).

    Article  CAS  Google Scholar 

Download references

Acknowledgements

I thank V. Blanc, P. Lombardo, and H. Fernandez Lynch for thoughtful comments on a previous draft of this Comment. This work was funded by the National Human Genome Research Institute (K01HG010496) and the National Center for Advancing Translational Science (UL1TR002240).

Author information

Authors and Affiliations

  1. Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, USA

    Kayte Spector-Bagdady

Authors
  1. Kayte Spector-Bagdady
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kayte Spector-Bagdady.

Ethics declarations

Competing interests

The author declares no competing interests.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Spector-Bagdady, K. Hospitals should act now to notify patients about research use of their data and biospecimens. Nat Med 26, 306–308 (2020). https://doi.org/10.1038/s41591-020-0795-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41591-020-0795-6

This article is cited by

Search

Advanced search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing