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Global healthcare fairness: We should be sharing more, not less, data

Author

Listed:
  • Kenneth P Seastedt
  • Patrick Schwab
  • Zach O’Brien
  • Edith Wakida
  • Karen Herrera
  • Portia Grace F Marcelo
  • Louis Agha-Mir-Salim
  • Xavier Borrat Frigola
  • Emily Boardman Ndulue
  • Alvin Marcelo
  • Leo Anthony Celi

Abstract

The availability of large, deidentified health datasets has enabled significant innovation in using machine learning (ML) to better understand patients and their diseases. However, questions remain regarding the true privacy of this data, patient control over their data, and how we regulate data sharing in a way that that does not encumber progress or further potentiate biases for underrepresented populations. After reviewing the literature on potential reidentifications of patients in publicly available datasets, we argue that the cost—measured in terms of access to future medical innovations and clinical software—of slowing ML progress is too great to limit sharing data through large publicly available databases for concerns of imperfect data anonymization. This cost is especially great for developing countries where the barriers preventing inclusion in such databases will continue to rise, further excluding these populations and increasing existing biases that favor high-income countries. Preventing artificial intelligence’s progress towards precision medicine and sliding back to clinical practice dogma may pose a larger threat than concerns of potential patient reidentification within publicly available datasets. While the risk to patient privacy should be minimized, we believe this risk will never be zero, and society has to determine an acceptable risk threshold below which data sharing can occur—for the benefit of a global medical knowledge system.

Suggested Citation

  • Kenneth P Seastedt & Patrick Schwab & Zach O’Brien & Edith Wakida & Karen Herrera & Portia Grace F Marcelo & Louis Agha-Mir-Salim & Xavier Borrat Frigola & Emily Boardman Ndulue & Alvin Marcelo & Leo , 2022. "Global healthcare fairness: We should be sharing more, not less, data," PLOS Digital Health, Public Library of Science, vol. 1(10), pages 1-13, October.
  • Handle: RePEc:plo:pdig00:0000102
    DOI: 10.1371/journal.pdig.0000102
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    References listed on IDEAS

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    1. Matthew G Crowson & Dana Moukheiber & Aldo Robles Arévalo & Barbara D Lam & Sreekar Mantena & Aakanksha Rana & Deborah Goss & David W Bates & Leo Anthony Celi, 2022. "A systematic review of federated learning applications for biomedical data," PLOS Digital Health, Public Library of Science, vol. 1(5), pages 1-14, May.
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