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

by Tasioulas, John , Sheehan, Mark , Wicks, Paul , Greshake, Bastian , O'Neill, Onora , Montgomery, Jonathan , Brownsword, Roger , Richards, Martin P , Vayena, Effy , Ladher, Navjoyt , Rid, Annette , Kahn, Jeffrey P , Edwards, Sarah Jane , O'Connor, Daniel

in 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

2016

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2016

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2016

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Journal Article

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

Tasioulas, John,

Sheehan, Mark,

Wicks, Paul,

Greshake, Bastian,

O'Neill, Onora,

Montgomery, Jonathan,

Brownsword, Roger,

Richards, Martin P,

Vayena, Effy,

Ladher, Navjoyt,

Rid, Annette,

Kahn, Jeffrey P,

Edwards, Sarah Jane,

O'Connor, Daniel

2016

Overview

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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Publisher

Institute of Medical Ethics and BMJ Publishing Group Ltd,BMJ Publishing Group Ltd,BMJ Publishing Group LTD,BMJ Publishing Group

Subject

Accords

/ Amyotrophic lateral sclerosis

/ Analysis

/ Citizens

/ Clinical trials

/ Current Controversy

/ Ethical aspects