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Towards responsible, lawful and ethical data processing: Patient data in the UK

Author

Listed:
  • Johnson, Tess
  • Kollnig, Konrad
  • Dewitte, Pierre

Abstract

In May 2021, the UK National Health Service (NHS) proposed a scheme-called General Practice Data for Planning Research (GPDPR)-for sharing patients' data. Under that system, a patient who does not wish to participate must actively opt out of their data being shared with third parties for research and other purposes. In this paper, we analyse the lessons that can be learned for the responsible and ethical governance of health data from the NHS' new scheme. More specifically, we explore the extent to which the opt-out within the planned scheme complies with the requirements stemming from the General Data Protection Regulation (GDPR), particularly in relation to the principles of lawfulness and transparency. We then evaluate, from an ethical perspective, this opt-out 'nudge' and whether it is sufficiently resistible, reversible, and has appropriate goals. In light of the above, we then propose improvements for the scheme's legal and ethical acceptability.

Suggested Citation

  • Johnson, Tess & Kollnig, Konrad & Dewitte, Pierre, 2022. "Towards responsible, lawful and ethical data processing: Patient data in the UK," Internet Policy Review: Journal on Internet Regulation, Alexander von Humboldt Institute for Internet and Society (HIIG), Berlin, vol. 11(1), pages 1-25.
    • Handle: RePEc:zbw:iprjir:254269
    DOI: 10.14763/2022.1.1638
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