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Research led by participants: a new social contract for a new kind of research
  1. Effy Vayena1,
  2. Roger Brownsword2,
  3. Sarah Jane Edwards3,
  4. Bastian Greshake4,
  5. Jeffrey P Kahn5,
  6. Navjyot Ladher6,
  7. Jonathan Montgomery7,
  8. Daniel O'Connor8,
  9. Onora O'Neill9,
  10. Martin P Richards10,
  11. Annette Rid11,
  12. Mark Sheehan12,
  13. Paul Wicks13,
  14. John Tasioulas14
  1. 1Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland
  2. 2Dickson Poon School of Law, King's College London, London, UK
  3. 3Centre for Bioethics and RandD, UCL and UCLH, London, UK
  4. 4Department for Applied Bioinformatics, Institute for Cell Biology and Neuroscience, Goethe University, Frankfurt am Main, Germany
  5. 5Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland, USA
  6. 6BMJ, London, UK
  7. 7UCL Laws, University College London, London, UK
  8. 8Humanities and Social Sciences, Wellcome Trust, London, UK
  9. 9Department of Philosophy, Cambridge University, Cambridge, UK
  10. 10Centre for Family Research, University of Cambridge, London, UK
  11. 11Department of Social Science, Health & Medicine, King's College London, London, UK
  12. 12University of Oxford, The Ethox Centre, Oxford, UK
  13. 13PatientsLikeMe, Boston, USA
  14. 14Yeoh Tiong Lay Centre for Politics, Philosophy and Law, Dickson Poon School of Law, King's College London, London, UK
  1. Correspondence to Dr Effy Vayena, Institute of Biomedical Ethics, University of Zurich, Pestalozzistrasse 24, Zurich 8032, Switzerland; vayena{at}ethik.uzh.ch

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.

  • Ethics Committees/Consultation
  • Research Ethics
  • Scientific Research
  • Social Control of Human Experimentation
  • Social Control of Science/Technology

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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