Public involvement in the governance of population-level biomedical research: unresolved questions and future directions
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
Journal of Medical Ethics 47 (7):522-525 (2021)
AbstractPopulation-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.
Similar books and articles
Authority and the Future of Consent in Population-Level Biomedical Research.Mark Sheehan, Rachel Thompson, Jon Fistein, Jim Davies, Michael Dunn, Michael Parker, Julian Savulescu & Kerrie Woods - forthcoming - Public Health Ethics.
National Standards for Public Involvement in Research: missing the forest for the trees.Matthew S. McCoy, Karin Rolanda Jongsma, Phoebe Friesen, Michael Dunn, Carolyn Plunkett Neuhaus, Leah Rand & Mark Sheehan - 2018 - Journal of Medical Ethics 44 (12):801-804.
Big Data and Health Research—The Governance Challenges in a Mixed Data Economy.Søren Holm & Thomas Ploug - 2017 - Journal of Bioethical Inquiry 14 (4):515-525.
Public deliberation to develop ethical norms and inform policy for biobanks: Lessons learnt and challenges remaining.Kieran C. O’Doherty & Michael M. Burgess - 2013 - Research Ethics 9 (2):55-77.
Genomics and Public Involvement: Giving Justifications Their Due.Gabriele Badano - 2012 - Studies in Ethics, Law, and Technology 6 (1).
Collective agency and the concept of ‘public’ in public involvement: A practice-oriented analysis.Tobias Hainz, Sabine Bossert & Daniel Strech - 2016 - BMC Medical Ethics 17 (1):1-14.
Clinical biobanks in Italy and Liguria: Ethical and social issues, initiatives at the national, regional and local level.Barbara Parodi - 2013 - Research Ethics 9 (2):78-85.
Corporate Governance Research Opportunities in Nigeria: A National Development Issue.Rosemary O. Obasi - 2019 - International Letters of Social and Humanistic Sciences 87:13-22.
Disease surveillance data sharing for public health: the next ethical frontiers.Patty Kostkova - 2018 - Life Sciences, Society and Policy 14 (1):1-5.
Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study.Corine Mouton Dorey, Holger Baumann & Nikola Biller-Andorno - 2018 - BMC Medical Ethics 19 (1):20.
Patient and public involvement: Two sides of the same coin or different coins altogether?Matthew S. McCoy, Jonathan Warsh, Leah Rand, Michael Parker & Mark Sheehan - 2019 - Bioethics 33 (6):708-715.
The Governance Challenges of Corporate Political Activity.Nicolas Dahan, Michael Hadani & Douglas Schuler - 2013 - Business and Society 52 (3):365-387.
Ethical issues in using Twitter for population-level depression monitoring: a qualitative study.Jude Mikal, Samantha Hurst & Mike Conway - 2016 - BMC Medical Ethics 17 (1):1.
Giving Voice to Patients: Developing a Discussion Method to Involve Patients in Translational Research.Simone Burg, Elisa Garcia, Lieke Scheer & Marianne Boenink - 2018 - NanoEthics 12 (3):181-197.
Funding Priorities: Autism and the Need for a More Balanced Research Agenda in Canada.T. M. Krahn & A. Fenton - 2012 - Public Health Ethics 5 (3):296-310.
Added to PP
Historical graph of downloads
Citations of this work
What can data trusts for health research learn from participatory governance in biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - forthcoming - Journal of Medical Ethics.
Trust and The Acquisition and Use of Public Health Information.Stephen Holland, Jamie Cawthra, Tamara Schloemer & Peter Schröder-Bäck - 2022 - Health Care Analysis 30 (1):1-17.
The social licence for data-intensive health research: towards co-creation, public value and trust.Johannes J. M. van Delden, Menno Mostert, Ghislaine J. M. W. van Thiel, Shona Kalkman & Sam H. A. Muller - 2021 - BMC Medical Ethics 22 (1):1-9.
Community partnered participatory research in southeast louisiana communities threatened by climate change: The c-learn experience.Benjamin F. Springgate, Olivia Sugarman, Kenneth B. Wells, Lawrence A. Palinkas, Diana Meyers, Ashley Wennerstrom, Arthur Johnson, Catherine Haywood, Daniel Sarpong & Richard Culbertson - 2021 - American Journal of Bioethics 21 (10):46-48.
References found in this work
The Legitimacy of Global Governance Institutions.Allen Buchanan & Robert O. Keohane - 2006 - Ethics and International Affairs 20 (4):405-437.
Linking Trust to Trustworthiness.Onora O’Neill - 2018 - International Journal of Philosophical Studies 26 (2):293-300.
Machineries for Making Publics: Inscribing and De-scribing Publics in Public Engagement.Ulrike Felt & Maximilian Fochler - 2010 - Minerva 48 (3):219-238.
Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.