Please use this identifier to cite or link to this item: http://hdl.handle.net/2381/31514
Title: The social licence for research: why care.data ran into trouble
Authors: Carter, Pam
Laurie, G. T.
Dixon-Woods, Mary
First Published: 23-Jan-2015
Publisher: BMJ Publishing Group With: Institute of Medical Ethics (IME)
Citation: Carter P, Laurie GT, Dixon-Woods M. J Med Ethics Published Online First Jan 23 2015: doi:10.1136/ medethics-2014-102374
Abstract: In this article we draw on the concept of a social licence to explain public concern at the introduction of care.data, a recent English initiative designed to extract data from primary care medical records for commissioning and other purposes, including research. The concept of a social licence describes how the expectations of society regarding some activities may go beyond compliance with the requirements of formal regulation; those who do not fulfil the conditions for the social licence (even if formally compliant) may experience ongoing challenge and contestation. Previous work suggests that people's cooperation with specific research studies depends on their perceptions that their participation is voluntary and is governed by values of reciprocity, non-exploitation and service of the public good. When these conditions are not seen to obtain, threats to the social licence for research may emerge. We propose that care.data failed to adequately secure a social licence because of: (i) defects in the warrants of trust provided for care.data, (ii) the implied rupture in the traditional role, expectations and duties of general practitioners, and (iii) uncertainty about the status of care.data as a public good. The concept of a social licence may be useful in explaining the specifics of care.data, and also in reinforcing the more general lesson for policy-makers that legal authority does not necessarily command social legitimacy.
DOI Link: 10.1136/medethics-2014-102374
ISSN: 0306-6800
eISSN: 1473-4257
Links: http://jme.bmj.com/content/early/2015/01/23/medethics-2014-102374.abstract?papetoc
http://hdl.handle.net/2381/31514
Version: Publisher Version
Status: Peer-reviewed
Type: Journal Article
Rights: This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
Appears in Collections:Published Articles, Dept. of Health Sciences

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