Ethical Issues in Consent for the Reuse of Data in Health Data Platforms

作者：Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan, Ilina Singh · 发表于：Science and Engineering Ethics · 年份：2021 · DOI：10.1007/s11948-021-00282-0 · 被引用次数：43 · 研究领域：Ethics in Clinical Research、Health Systems, Economic Evaluations, Quality of Life、Data Analysis and Archiving

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 ...