Public involvement in the governance of population-level biomedical research: unresolved questions and future directions
| Autor: | Teresa Finlay, Max Williamson, Rebecca Dawson, Vicky Chico, Oli Williams, Effy Vayena, Sapfo Lignou, Nigel Hughes, A. Evans, Leah Rand, Aaron J. Goldenberg, Sarah Chan, Lisa Hinton, Karin R. Jongsma, Michael Dunn, Mahsa Shabani, Matthew S. McCoy, Rachel Thompson, Barbara Prainsack, Ciara Staunton, Barbara A. Koenig, Sarah Cunningham-Burley, Jessica Bell, Sonja Erikainen, Kinga Varnai, Mark Sheehan, Nick Fahy, Phoebe Friesen, Nils Hoppe, Haidan Chen, Lucy Frith, Julie L Darbyshire, Michael W. Parker, Michael M. Burgess, Michelle L. McGowan, Annie Sorbie |
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| Přispěvatelé: | Erikainen, Sonja [0000-0002-1442-3050], Jongsma, Karin [0000-0001-8135-6786], Dunn, Michael [0000-0002-5603-6200], McCoy, Matthew [0000-0002-5273-3877], Cunningham-Burley, Sarah [0000-0002-0009-7653], Darbyshire, Julie [0000-0002-7655-1963], Frith, Lucy [0000-0002-8506-0699], Apollo - University of Cambridge Repository |
| Rok vydání: | 2020 |
| Předmět: |
Philosophy and Religion
Health (social science) research ethics CONSENT Population health 0603 philosophy ethics and religion Value pluralism 03 medical and health sciences Arts and Humanities (miscellaneous) Cultural diversity Political science Medicine and Health Sciences HEALTH RESEARCH 030304 developmental biology 0303 health sciences Research ethics public health ethics Health Policy Corporate governance Stakeholder regulation 06 humanities and the arts decision-making 16. Peace & justice 3. Good health Data sharing Issues ethics and legal aspects Engineering ethics 060301 applied ethics TRUST Qualitative research |
| Zdroj: | JOURNAL OF MEDICAL ETHICS 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 Journal of Medical Ethics 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 2020, ' Public involvement in the governance of population-level biomedical research : Unresolved questions and future directions ', Journal of Medical Ethics . https://doi.org/10.1136/medethics-2020-106530 |
| ISSN: | 1473-4257 0306-6800 |
| DOI: | 10.1136/medethics-2020-106530 |
| Popis: | 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. [Abstract copyright: © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.] |
| Databáze: | OpenAIRE |
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