##common.pageHeaderLogo.altText##

Viewpoint

Vol. 153 No. 1 (2023)

Medical data sharing and privacy: a false dichotomy?

  • Marcello Ienca
Cite this as:
Swiss Med Wkly. 2023;153:40019
Published
06.01.2023

References

  1. Pletscher F, Mändli Lerch K, Glinz D. Willingness to share anonymised routinely collected clinical health data in Switzerland: a cross-sectional survey. Swiss Med Wkly. 2022 Jun;152:w30182.https://doi.org/10.4414/SMW.2022.w30182
  2. Miller RH, Sim I. Physicians’ use of electronic medical records: barriers and solutions. Health Aff (Millwood). 2004 Mar-Apr;23(2):116–26. https://doi.org/10.1377/hlthaff.23.2.116
  3. Insel TR. Digital phenotyping: technology for a new science of behavior. JAMA. 2017 Oct;318(13):1215–6. https://doi.org/10.1001/jama.2017.11295
  4. Marx V. Biology: the big challenges of big data. Nature. 2013 Jun;498(7453):255–60. https://doi.org/10.1038/498255a
  5. Ienca M, Ferretti A, Hurst S, Puhan M, Lovis C, Vayena E. Considerations for ethics review of big data health research: A scoping review. PLoS One. 2018 Oct;13(10):e0204937. https://doi.org/10.1371/journal.pone.0204937
  6. Childress JF. The place of autonomy in bioethics. Hastings Cent Rep. 1990 Jan-Feb;20(1):12–7. https://doi.org/10.2307/3562967
  7. Childress JF, Beauchamp TL. Principles of biomedical ethics. Oxford University Press Oxford; 1994.
  8. Barker E, Stalley RF. (Oxford: Oxford University Press, 1995).
  9. Warren S, Brandeis L. The right to privacy. Harv Law Rev. 1890;15.
  10. Floridi L. Four challenges for a theory of informational privacy. Ethics Inf Technol. 2006;8(3):109–19. https://doi.org/10.1007/s10676-006-9121-3
  11. Tavani HT. Informational privacy, data mining, and the internet. Ethics Inf Technol. 1999;1(2):137–45. https://doi.org/10.1023/A:1010063528863
  12. Zuboff S. Big other: surveillance capitalism and the prospects of an information civilization. J Inf Technol. 2015;30(1):75–89. https://doi.org/10.1057/jit.2015.5
  13. Véliz C. Privacy is power. Melville House; 2021.
  14. Isaak J, Hanna MJ. User data privacy: Facebook, Cambridge Analytica, and privacy protection. Computer. 2018;51(8):56–9. https://doi.org/10.1109/MC.2018.3191268
  15. Ienca M, Vayena E. Cambridge analytica and online manipulation. Sci Am. 2018;30.
  16. Wikina SB. What caused the breach? An examination of use of information technology and health data breaches. Perspect Health Inf Manag. 2014 Oct;11:1h.
  17. Beebe GW. Vol. 73 245-246 (American Public Health Association, 1983).
  18. Choudhury S, Fishman JR, McGowan ML, Juengst ET. Big data, open science and the brain: lessons learned from genomics. Front Hum Neurosci. 2014 May;8:239. https://doi.org/10.3389/fnhum.2014.00239
  19. Popper, K. R. Science as falsification. Conjectures and refutations 1, 33-39 (1963).
  20. Joly Y, Dove ES, Knoppers BM, Bobrow M, Chalmers D. Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLOS Comput Biol. 2012;8(7):e1002549. https://doi.org/10.1371/journal.pcbi.1002549
  21. Leon PG, et al. in Proceedings of the ninth symposium on usable privacy and security. 1-12.
  22. Caine K, Hanania R. Patients want granular privacy control over health information in electronic medical records. J Am Med Inform Assoc. 2013 Jan;20(1):7–15. https://doi.org/10.1136/amiajnl-2012-001023
  23. Brall C, Berlin C, Zwahlen M, Ormond KE, Egger M, Vayena E. Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. PLoS One. 2021 Apr;16(4):e0249141. https://doi.org/10.1371/journal.pone.0249141