Skip to main content

Advertisement

Log in

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

  • Comment
  • Published:

From Nature Medicine

View current issue Submit your manuscript

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, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

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

Authors

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

  • Springer Nature America, Inc.

This article is cited by

Navigation