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