Research led by participants: a new social contract for a new kind of research

Affiliations

¹ Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland.
² Dickson Poon School of Law, King's College London, London, UK.
³ Centre for Bioethics and RandD, UCL and UCLH, London, UK.
⁴ Department for Applied Bioinformatics, Institute for Cell Biology and Neuroscience, Goethe University, Frankfurt am Main, Germany.
⁵ Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA.
⁶ BMJ, London, UK.
⁷ UCL Laws, University College London, London, UK.
⁸ Humanities and Social Sciences, Wellcome Trust, London, UK.
⁹ Department of Philosophy, Cambridge University, Cambridge, UK.
¹⁰ Centre for Family Research, University of Cambridge, London, UK.
¹¹ Department of Social Science, Health & Medicine, King's College London, London, UK.
¹² University of Oxford, The Ethox Centre, Oxford, UK.
¹³ PatientsLikeMe, Boston, USA.
¹⁴ Yeoh Tiong Lay Centre for Politics, Philosophy and Law, Dickson Poon School of Law, King's College London, London, UK.

PMID: 25825527
PMCID: PMC4819634
DOI: 10.1136/medethics-2015-102663

Research led by participants: a new social contract for a new kind of research

Effy Vayena et al. J Med Ethics. 2016 Apr.

. 2016 Apr;42(4):216-9.

doi: 10.1136/medethics-2015-102663. Epub 2015 Mar 30.

Authors

Affiliations

¹ Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland.
² Dickson Poon School of Law, King's College London, London, UK.
³ Centre for Bioethics and RandD, UCL and UCLH, London, UK.
⁴ Department for Applied Bioinformatics, Institute for Cell Biology and Neuroscience, Goethe University, Frankfurt am Main, Germany.
⁵ Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA.
⁶ BMJ, London, UK.
⁷ UCL Laws, University College London, London, UK.
⁸ Humanities and Social Sciences, Wellcome Trust, London, UK.
⁹ Department of Philosophy, Cambridge University, Cambridge, UK.
¹⁰ Centre for Family Research, University of Cambridge, London, UK.
¹¹ Department of Social Science, Health & Medicine, King's College London, London, UK.
¹² University of Oxford, The Ethox Centre, Oxford, UK.
¹³ PatientsLikeMe, Boston, USA.
¹⁴ Yeoh Tiong Lay Centre for Politics, Philosophy and Law, Dickson Poon School of Law, King's College London, London, UK.

PMID: 25825527
PMCID: PMC4819634
DOI: 10.1136/medethics-2015-102663

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.

Keywords: Ethics Committees/Consultation; Research Ethics; Scientific Research; Social Control of Human Experimentation; Social Control of Science/Technology.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

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References

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Research led by participants: a new social contract for a new kind of research

Affiliations

Research led by participants: a new social contract for a new kind of research

Authors

Affiliations

Abstract

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources