Edinburgh Research Explorer

The Social Licence for Research: Why care.data Ran Into Trouble

Research output: Contribution to journalArticle

Related Edinburgh Organisations

Documents

  • Download as Adobe PDF

    Rights statement: © Carter, P., Laurie, G., & Dixon-Woods, M. (2015). The Social Licence for Research: Why care.data Ran Into Trouble. Journal of Medical Ethics, 1-6. 10.1136/medethics-2014-102374

    Submitted manuscript, 230 KB, PDF-document

Original languageEnglish
Article numberPMID: 25617016
Pages (from-to)404-409
JournalJournal of Medical Ethics
Volume41
Issue number5
Early online date23 Jan 2015
DOIs
StatePublished - 2015

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.

Download statistics

No data available

ID: 18442423