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The social licence for research: why care.data ran into trouble

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journal contribution
posted on 2015-01-28, 15:53 authored by Pam Carter, G. T. Laurie, Mary Dixon-Woods
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.

Funding

Professor Mary Dixon-Woods holds a Senior Investigator Award from the Wellcome Trust (WT097899) that has supported this work.

History

Citation

Carter P, Laurie GT, Dixon-Woods M. J Med Ethics Published Online First Jan 23 2015: doi:10.1136/ medethics-2014-102374

Author affiliation

/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicine/Department of Health Sciences

Version

  • VoR (Version of Record)

Published in

Carter P

Publisher

BMJ Publishing Group With: Institute of Medical Ethics (IME)

issn

0306-6800

eissn

1473-4257

Available date

2015-01-28

Publisher version

http://jme.bmj.com/content/early/2015/01/23/medethics-2014-102374.abstract?papetoc

Language

en

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