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

Richard Milne, Annie Sorbie, Mary Dixon-Woods

Research output: Contribution to journalArticlepeer-review

Abstract

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.
Original languageEnglish
JournalJournal of Medical Ethics
Early online date19 Mar 2021
DOIs
Publication statusE-pub ahead of print - 19 Mar 2021

Keywords

  • data trusts
  • participatory governance
  • public involvement
  • biobanking

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