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What can data trusts for health research learn from participatory governance in biobanks?

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Sorbie, Annie 


New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation.



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Journal of Medical Ethics

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BMJ Publishing Group

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Health Foundation (unknown)
Department of Health (via National Institute for Health Research (NIHR)) (NF-SI-0617-10026)
This work was supported by funding from the National Institute for Health Research [Cambridge Biomedical Research Centre at the Cambridge University Hospitals NHS Foundation Trust]. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. Richard Milne is funded by Wellcome grant 206194 to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. Mary Dixon-Woods is funded by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies (THIS) Institute. THIS Institute is supported by the Health Foundation—an independent charity committed to bringing about better health and health care for people in the UK. MDW is a National Institute for Health Research (NIHR) Senior Investigator (NF-SI-0617-10026)