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J Med Ethics. 2013 Dec;39(12):780-2. doi: 10.1136/medethics-2012-100642. Epub 2013 Mar 27.

Lay REC members: patient or public?

Abstract

In practice, the role of lay members of research ethics committees (RECs) often involves checking the accessibility of written materials, checking that the practical needs of participants have been considered and ensuring that a lay summary of the research will be produced. In this brief report, I argue that all these tasks would be more effectively carried out through a process of patient involvement (PI) in research projects prior to ethical review. Involving patients with direct experience of the topic under investigation brings added value beyond the contributions typically made by lay REC members, who are often not patients themselves. This is because PI tailors the design and conduct of research to the specific interests and concerns of the people who will actually take part in a project and make use of its findings. If a project has PI in its early stages, then a similar input from lay REC members could at best result in duplication of effort and at worst create the potential for conflict. The rationale for lay REC membership will therefore need to change from 'contributing a patient perspective' to 'ensuring transparency and public accountability in REC decisions'. This has implications for addressing more strategic questions about lay REC membership, including who is best recruited to the role and how they should be expected to contribute in practice.

KEYWORDS:

Ethics Committees/Consultation; Research Ethics

PMID:
23536688
DOI:
10.1136/medethics-2012-100642
[Indexed for MEDLINE]
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