4.3 Article

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

Journal

JOURNAL OF MEDICAL ETHICS
Volume 42, Issue 4, Pages 216-219

Publisher

BMJ PUBLISHING GROUP
DOI: 10.1136/medethics-2015-102663

Keywords

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Funding

  1. Abbvie
  2. Accorda
  3. AstraZeneca
  4. Avanir
  5. Biogen
  6. Boehringer Ingelheim
  7. Genzyme
  8. Janssen
  9. Johnson Johnson
  10. Merck
  11. Novartis
  12. Sanofi
  13. UCB
  14. Kaiser Permanente
  15. Robert Wood Johnson Foundation
  16. Sage Bionetworks
  17. AKU Society
  18. University of Maryland
  19. University of Michigan

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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.

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