title: Research led by participants: a new social contract for a new kind of research.
abstract: In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish.
authors.affiliation: Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland.
authors.forename: Effy
authors.initials: E
authors.lastname: Vayena
authors.affiliation: Dickson Poon School of Law, King's College London, London, UK.
authors.forename: Roger
authors.initials: R
authors.lastname: Brownsword
authors.affiliation: Centre for Bioethics and RandD, UCL and UCLH, London, UK.
authors.forename: Sarah Jane
authors.initials: SJ
authors.lastname: Edwards
authors.affiliation: Department for Applied Bioinformatics, Institute for Cell Biology and Neuroscience, Goethe University, Frankfurt am Main, Germany.
authors.forename: Bastian
authors.initials: B
authors.lastname: Greshake
authors.affiliation: Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA.
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Kahn
authors.affiliation: BMJ, London, UK.
authors.forename: Navjoyt
authors.initials: N
authors.lastname: Ladher
authors.affiliation: UCL Laws, University College London, London, UK.
authors.forename: Jonathan
authors.identifier: http://orcid.org/0000-0002-4592-0930
authors.initials: J
authors.lastname: Montgomery
authors.affiliation: Humanities and Social Sciences, Wellcome Trust, London, UK.
authors.forename: Daniel
authors.initials: D
authors.lastname: O'Connor
authors.affiliation: Department of Philosophy, Cambridge University, Cambridge, UK.
authors.forename: Onora
authors.initials: O
authors.lastname: O'Neill
authors.affiliation: Centre for Family Research, University of Cambridge, London, UK.
authors.forename: Martin P
authors.initials: MP
authors.lastname: Richards
authors.affiliation: Department of Social Science, Health & Medicine, King's College London, London, UK.
authors.forename: Annette
authors.initials: A
authors.lastname: Rid
authors.affiliation: University of Oxford, The Ethox Centre, Oxford, UK.
authors.forename: Mark
authors.initials: M
authors.lastname: Sheehan
authors.affiliation: PatientsLikeMe, Boston, USA.
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
authors.affiliation: Yeoh Tiong Lay Centre for Politics, Philosophy and Law, Dickson Poon School of Law, King's College London, London, UK.
authors.forename: John
authors.initials: J
authors.lastname: Tasioulas
mesh_terms: D032984:Ethics, Research; D006805:Human Experimentation / Q000941:ethics*; D006801:Humans; D011640:Public Policy / Q000331:legislation & jurisprudence / Q000639:trends; D035842:Research Subjects; D012941:Social Responsibility
keywords: Ethics Committees/Consultation; Research Ethics; Scientific Research; Social Control of Human Experimentation; Social Control of Science/Technology
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