Details
| Original language | English |
|---|---|
| Pages (from-to) | 522-525 |
| Number of pages | 4 |
| Journal | Journal of medical ethics |
| Volume | 47 |
| Issue number | 7 |
| Early online date | 6 Oct 2020 |
| Publication status | Published - 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
- Nursing(all)
- Issues, ethics and legal aspects
- Social Sciences(all)
- Health(social science)
- Arts and Humanities(all)
- Arts and Humanities (miscellaneous)
- Medicine(all)
- Health Policy
Sustainable Development Goals
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In: Journal of medical ethics, Vol. 47, No. 7, 24.06.2021, p. 522-525.
Research output: Contribution to journal › Short/Brief/Rapid Communication › Research › peer review
}
TY - JOUR
T1 - Public involvement in the governance of population-level biomedical research
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
AU - Chico, Vicky
AU - Cunningham-Burley, Sarah
AU - Darbyshire, Julie
AU - Dawson, Rebecca
AU - Evans, Andrew
AU - Fahy, Nick
AU - Finlay, Teresa
AU - Frith, Lucy
AU - Goldenberg, Aaron
AU - Hinton, Lisa
AU - Hoppe, Nils
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.
PY - 2021/6/24
Y1 - 2021/6/24
N2 - 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.
AB - 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.
KW - decision-making
KW - public health ethics
KW - regulation
KW - research ethics
UR - http://www.scopus.com/inward/record.url?scp=85092797300&partnerID=8YFLogxK
U2 - 10.1136/medethics-2020-106530
DO - 10.1136/medethics-2020-106530
M3 - Short/Brief/Rapid Communication
C2 - 33023977
VL - 47
SP - 522
EP - 525
JO - Journal of medical ethics
JF - Journal of medical ethics
SN - 0306-6800
IS - 7
ER -