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Adapting Standards: Ethical Oversight of Participant-Led Health Research

Vayena, E; Tasioulas, J; (2013) Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLOS MEDICINE , 10 (3) , Article e1001402. 10.1371/journal.pmed.1001402. Green open access

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Abstract

Online social media and digital technologies have facilitated formation of communities of individuals engaged in establishing and conducting health research projects. The results of such participant-led research (PLR) have already appeared in leading biomedical journals. These projects involve research with human participants. Hence, what are the requirements for ethical oversight? To what extent is standard ethics review also suitable for PLR? A comparison of PLR with standard research reveals six areas that are of potential relevance to ethical oversight: institutionalization, state recognition and support, incentive structures, openness, bottom-up approach, and self-experimentation. The distinctive nature of PLR requires adaptation of ethical oversight standards to the character of such research. These should strike a balance between protecting interests of research participants and achieving promised benefits of PLR. The appropriate form of ethical oversight for PLR projects depends on which of three categories they fall into. If they meet the “institution-plus” criterion, standard ethics review applies. If not, then the appropriate form of oversight depends on the application of a minimal risk criterion.

Type: Article
Title: Adapting Standards: Ethical Oversight of Participant-Led Health Research
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pmed.1001402
Publisher version: http://dx.doi.org/10.1371/journal.pmed.1001402
Language: English
Additional information: © 2013 Vayena, Tasioulas. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > UCL SLASH
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Laws
URI: http://discovery.ucl.ac.uk/id/eprint/1387118
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