1. Ethical Issues in Consent for the Reuse of Data in Health Data Platforms
- Author
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Sophie Walker, Alex McKeown, Miranda Mourby, Mark Sheehan, Paul Harrison, and Ilina Singh
- Subjects
Social contract ,Health (social science) ,Computer science ,Big data ,Context (language use) ,Contracts ,Reuse ,Morals ,0603 philosophy, ethics and religion ,Consent ,03 medical and health sciences ,0302 clinical medicine ,Management of Technology and Innovation ,Machine learning ,Humans ,030212 general & internal medicine ,Public engagement ,Original Research/Scholarship ,Ethics ,Research ethics ,Informed Consent ,business.industry ,Health Policy ,Presumption ,06 humanities and the arts ,Data science ,3. Good health ,Data sharing ,Issues, ethics and legal aspects ,Health data platforms ,060301 applied ethics ,business - Abstract
Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.
- Published
- 2021
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