Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions

Research output: Contribution to journalShort/Brief/Rapid CommunicationResearchpeer review

Authors

  • 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

External Research Organisations

  • University of Edinburgh
  • McGill University
  • University Medical Center Utrecht (UMC)
  • University of Pennsylvania
  • University of British Columbia
  • Peking University
  • The University of Sheffield
  • Melanoma Patient Network Europe
  • Case Western Reserve University
  • University of Cambridge
  • Janssen Research and Development
  • TU Wien (TUW)
  • University of Cincinnati
  • Ghent University
  • Middlesex University
  • Swansea University
  • OUH NHS FT and NIHR Oxford Biomedical Research Centre
  • Universität Zürich (UZH)
  • Harvard University
  • Brigham and Women’s Hospital (BWH)
  • University of Oxford
  • University of Liverpool
  • Oxford Brookes University
View graph of relations

Details

Original languageEnglish
Pages (from-to)522-525
Number of pages4
JournalJournal of medical ethics
Volume47
Issue number7
Early online date6 Oct 2020
Publication statusPublished - 24 Jun 2021

Abstract

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 meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

Keywords

    decision-making, public health ethics, regulation, research ethics

ASJC Scopus subject areas

Sustainable Development Goals

Cite this

Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions. / Erikainen, Sonja; Friesen, Phoebe; Rand, Leah et al.
In: Journal of medical ethics, Vol. 47, No. 7, 24.06.2021, p. 522-525.

Research output: Contribution to journalShort/Brief/Rapid CommunicationResearchpeer review

Erikainen, S, Friesen, P, Rand, L, Jongsma, K, Dunn, M, Sorbie, A, McCoy, M, Bell, J, Burgess, M, Chen, H, Chico, V, Cunningham-Burley, S, Darbyshire, J, Dawson, R, Evans, A, Fahy, N, Finlay, T, Frith, L, Goldenberg, A, Hinton, L, Hoppe, N, Hughes, N, Koenig, B, Lignou, S, McGowan, M, Parker, M, Prainsack, B, Shabani, M, Staunton, C, Thompson, R, Varnai, K, Vayena, E, Williams, O, Williamson, M, Chan, S & Sheehan, M 2021, 'Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions', Journal of medical ethics, vol. 47, no. 7, pp. 522-525. https://doi.org/10.1136/medethics-2020-106530
Erikainen, S., Friesen, P., Rand, L., Jongsma, K., Dunn, M., Sorbie, A., McCoy, M., Bell, J., Burgess, M., Chen, H., Chico, V., Cunningham-Burley, S., Darbyshire, J., Dawson, R., Evans, A., Fahy, N., Finlay, T., Frith, L., Goldenberg, A., ... Sheehan, M. (2021). Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions. Journal of medical ethics, 47(7), 522-525. https://doi.org/10.1136/medethics-2020-106530
Erikainen S, Friesen P, Rand L, Jongsma K, Dunn M, Sorbie A et al. Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions. Journal of medical ethics. 2021 Jun 24;47(7):522-525. Epub 2020 Oct 6. doi: 10.1136/medethics-2020-106530
Erikainen, Sonja ; Friesen, Phoebe ; Rand, Leah et al. / Public involvement in the governance of population-level biomedical research : Unresolved questions and future directions. In: Journal of medical ethics. 2021 ; Vol. 47, No. 7. pp. 522-525.
Download
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abstract = "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 Caf{\'e} method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.",
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T2 - Unresolved questions and future directions

AU - Erikainen, Sonja

AU - Friesen, Phoebe

AU - Rand, Leah

AU - Jongsma, Karin

AU - Dunn, Michael

AU - Sorbie, Annie

AU - McCoy, Matthew

AU - Bell, Jessica

AU - Burgess, Michael

AU - Chen, Haidan

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AU - Evans, Andrew

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AU - Hughes, Nigel

AU - Koenig, Barbara

AU - Lignou, Sapfo

AU - McGowan, Michelle

AU - Parker, Michael

AU - Prainsack, Barbara

AU - Shabani, Mahsa

AU - Staunton, Ciara

AU - Thompson, Rachel

AU - Varnai, Kinga

AU - Vayena, Effy

AU - Williams, Oli

AU - Williamson, Max

AU - Chan, Sarah

AU - Sheehan, Mark

N1 - Funding Information: Funding This research was principally funded by the Wellcome Trust small grant ’Public Involvement in the Governance of Population Level Research’ (219383/Z/19/Z). The authors would also like to acknowledge the stimulus of the Wellcome Trust Centre for Biomedicine, Self and Society Award (209519/Z/17/Z), the Wellcome Centre for Ethics and Humanities Award (203132/Z/16/Z), and the Oxford NIHR Biomedical Research Centre, all of which facilitated this work.

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