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

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 i...

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Bibliographic Details
Published in:Journal of medical ethics Vol. 42; no. 4; pp. 216 - 219
Main Authors: Vayena, Effy, Brownsword, Roger, Edwards, Sarah Jane, Greshake, Bastian, Kahn, Jeffrey P, Ladher, Navjoyt, Montgomery, Jonathan, O'Connor, Daniel, O'Neill, Onora, Richards, Martin P, Rid, Annette, Sheehan, Mark, Wicks, Paul, Tasioulas, John
Format: Journal Article
Language:English
Published: England Institute of Medical Ethics and BMJ Publishing Group Ltd 01.04.2016
BMJ Publishing Group Ltd
BMJ Publishing Group LTD
BMJ Publishing Group
Subjects:
Accords
Amyotrophic lateral sclerosis
Analysis
Citizens
Clinical trials
Current Controversy
Ethical aspects
Ethics
Ethics committees
Ethics, Research
Funding
Health information
Health research
Human Experimentation - ethics
Humans
Lithium
Medical ethics
Medical research
Participation
Patients
Peer relationships
Public Policy - legislation & jurisprudence
Public Policy - trends
Research design
Research ethics
Research Subjects
Responsibilities
Social contract
Social ethics
Social Responsibility
Society
Studies
Values
United States
Ethics Committees/Consultation
Research Ethics
Social Control of Human Experimentation
Social Control of Science/Technology
Scientific Research
ISSN:0306-6800, 1473-4257, 1473-4257
Online Access:Get full text
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Description
Summary: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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ISSN:0306-6800
1473-4257
1473-4257
DOI:10.1136/medethics-2015-102663