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

doi:10.1136/medethics-2020-106530

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

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Sonja Erikainen Centre for Biomedicine, Self and Society, Usher Institute, The University of Edinburgh, Edinburgh, UK PubMed articles Google scholar articles
Phoebe Friesen Biomedical Ethics Unit, McGill University, Montreal, Quebec, Canada PubMed articles Google scholar articles
Leah Rand Harvard Medical School and PORTAL, Brigham and Women's Hospital, Boston, Massachusetts, USA PubMed articles Google scholar articles
Karin Jongsma Department of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands PubMed articles Google scholar articles
Michael Dunn The Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Annie Sorbie Mason Institute for Medicine, Life Sciences and the Law, Edinburgh Law School, University of Edinburgh, Edinburgh, UK PubMed articles Google scholar articles
Matthew McCoy Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman, Philadelphia, Pennsylvania, USA PubMed articles Google scholar articles
Jessica Bell HeLEX, University of Oxford, Oxford, Oxfordshire, UK PubMed articles Google scholar articles
Michael Burgess School of Population and Public Health, The University of British Columbia, Vancouver, British Columbia, Canada PubMed articles Google scholar articles
Haidan Chen School of Health Humanities, Peking University, Beijing, China PubMed articles Google scholar articles
Vicky Chico School of Law, University of Sheffield, Sheffield, UK PubMed articles Google scholar articles
Sarah Cunningham-Burley Centre for Biomedicine, Self and Society, Usher Institute, The University of Edinburgh, Edinburgh, UK PubMed articles Google scholar articles
Julie Darbyshire Department of Primary Care Health Sciences, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Rebecca Dawson Usher Institute, University of Edinburgh, Edinburgh, UK PubMed articles Google scholar articles
Andrew Evans Melanoma Patient Network Europe, N/A, UK PubMed articles Google scholar articles
Nick Fahy Primary Care Health Sciences, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Teresa Finlay Primary Care Health Sciences, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Lucy Frith Institute of Population Health Sciences, University of Liverpool, Liverpool, UK PubMed articles Google scholar articles
Aaron Goldenberg Department of Bioethics, Case Western Reserve University, Cleveland, Ohio, USA PubMed articles Google scholar articles
Lisa Hinton THIS Institute, University of Cambridge, Cambridge, Cambridgeshire, UK PubMed articles Google scholar articles
Nils Hoppe Centre for Ethics and Law in the Life Sciences, Leibniz University, Hannover, Germany PubMed articles Google scholar articles
Nigel Hughes Observational Health Data Analytics/Epidemiology, Janssen Research and Development, Raritan, New Jersey, USA PubMed articles Google scholar articles
Barbara Koenig Department of Political Science, University of Vienna, Vienna, Austria PubMed articles Google scholar articles
Sapfo Lignou NeuroSec and Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Michelle McGowan Ethics Center, Cincinnati Children's Hospital Medical Center Department of Pediatrics, University of Cincinnati, Cincinnati, Ohio, USA PubMed articles Google scholar articles
Michael Parker The Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK PubMed articles Google scholar articles
Barbara Prainsack Department of Political Science, University of Vienna, Vienna, Austria PubMed articles Google scholar articles
Mahsa Shabani Faculty of Criminology, Criminal Law and Social Law, University of Ghent, Ghent, Belgium PubMed articles Google scholar articles
Ciara Staunton Middlesex University School of Law, Middlesex University London, London, UK PubMed articles Google scholar articles
Rachel Thompson Research Institute for Ethics and Law, Swansea University, Swansea, UK PubMed articles Google scholar articles
Kinga Varnai OUH NHS FT and NIHR Oxford Biomedical Research Centre, Oxford, UK PubMed articles Google scholar articles
Effy Vayena The Health Ethics and Policy Lab, University of Zurich, Zurich, Switzerland PubMed articles Google scholar articles
Oli Williams King’s College London and THIS Institute, University of Cambridge, Cambridge, UK PubMed articles Google scholar articles
Max Williamson University of Oxford, Oxford, UK PubMed articles Google scholar articles
Sarah Chan Centre for Biomedicine, Self and Society, Usher Institute, The University of Edinburgh, Edinburgh, UK PubMed articles Google scholar articles
Mark Sheehan The Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK PubMed articles Google scholar articles

Correspondence to Dr Sonja Erikainen, Centre for Biomedicine, Self and Society, Usher Institute, The University of Edinburgh, Edinburgh EH8 9YL, UK; sonja.erikainen{at}ed.ac.uk

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Citation

Erikainen S, Friesen P, Rand L, et al

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

Journal of Medical Ethics 2021;47:522-525.

Publication history

Received May 29, 2020
Revised August 17, 2020
Accepted August 20, 2020
First published October 6, 2020.

Online issue publication

June 24, 2021

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© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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