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    Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - 2021 - Journal of Medical Ethics 47 (7):522-525.
    Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...)
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  2.  8
    Charting Regulatory Stewardship in Health Research: Making the Invisible Visible.Graeme T. Laurie, Edward S. Dove, Agomoni Ganguli-Mitra, Isabel Fletcher, Catriona Mcmillan, Nayha Sethi & Annie Sorbie - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (2):333-347.
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    What can data trusts for health research learn from participatory governance in biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - forthcoming - Journal of Medical Ethics.
    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 (...)
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    Co-production and Managing Uncertainty in Health Research Regulation: A Delphi Study.Isabel Fletcher, Stanislav Birko, Edward S. Dove, Graeme T. Laurie, Catriona McMillan, Emily Postan, Nayha Sethi & Annie Sorbie - 2020 - Health Care Analysis 28 (2):99-120.
    European and international regulation of human health research is typified by a morass of interconnecting laws, diverse and divergent ethical frameworks, and national and transnational standards. There is also a tendency for legislators to regulate in silos—that is, in discrete fields of scientific activity without due regard to the need to make new knowledge as generalisable as possible. There are myriad challenges for the stakeholders—researchers and regulators alike—who attempt to navigate these landscapes. This Delphi study was undertaken in order to (...)
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