Journal Article


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

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.

Attached files

Authors

Erikainen, Sonja
Friesen, Phoebe
Rand, Leah
Jongsma, Karin
Dunn, Michael
Sorbie, Annie
McCoy, Matthew
Bell, Jessica
Burgess, Michael
Chen, Haidan
Chico, Vicky
Cunningham-Burley, Sarah
Darbyshire, Julie
Dawson, Rebecca
Evans, Andrew
Fahy, Nick
Finlay, Teresa
Frith, Lucy
Goldenberg, Aaron
Hinton, Lisa
Hoppe, Nils
Hughes, Nigel
Koenig, Barbara
Lignou, Sapfo
McGowan, Michelle
Parker, Michael
Prainsack, Barbara
Shabani, Mahsa
Staunton, Ciara
Thompson, Rachel
Varnai, Kinga
Vayena, Effy
Williams, Oli
Williamson, Max
Chan, Sarah
Sheehan, Mark

Oxford Brookes departments

Department of Nursing

Dates

Year of publication: 2020
Date of RADAR deposit: 2020-10-08


Creative Commons License This work is licensed under a Creative Commons Attribution 4.0 International License


Related resources

This RADAR resource is Identical to Public involvement in the governance of population-level biomedical research: Unresolved questions and future directions

Details

  • Owner: Joseph Ripp
  • Collection: Outputs
  • Version: 1 (show all)
  • Status: Live
  • Views (since Sept 2022): 241