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

Journal of medical ethics, 2015-05, Vol.41 (5), p.404-409 [Peer Reviewed Journal]

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions ;2015 BMJ Publishing Group Ltd and the Institute of Medical Ethics ;Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. ;Copyright: 2015 Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions ;Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions 2015 ;ISSN: 0306-6800 ;EISSN: 1473-4257 ;DOI: 10.1136/medethics-2014-102374 ;PMID: 25617016 ;CODEN: JMETDR

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  • Title:
    The social licence for research: why care.data ran into trouble
  • Author: Carter, Pam ; Laurie, Graeme T ; Dixon-Woods, Mary
  • Subjects: Analysis ; Clinical trials ; Company business management ; Confidentiality ; Consent ; Current Controversy ; Disclosure of information ; Ethical aspects ; Ethics ; GDP ; Gross Domestic Product ; Health services ; Humans ; Law ; Management ; Medical records ; Medical research ; Patients ; Public good ; Regulation ; Research - legislation & jurisprudence ; Researchers ; Social Justice - legislation & jurisprudence ; United Kingdom
  • Is Part Of: Journal of medical ethics, 2015-05, Vol.41 (5), p.404-409
  • Description: 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.
  • Publisher: England: Institute of Medical Ethics and BMJ Publishing Group Ltd
  • Language: English
  • Identifier: ISSN: 0306-6800
    EISSN: 1473-4257
    DOI: 10.1136/medethics-2014-102374
    PMID: 25617016
    CODEN: JMETDR
  • Source: Geneva Foundation Free Medical Journals at publisher websites
    AUTh Library subscriptions: ProQuest Central
    MEDLINE
    BMJ Open Access Journals
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