ArticleJournal of medical ethics2015
The social licence for research: why care.data ran into trouble.
Article in Journal of medical ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 172 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
172 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Open government data in health sector: a systematic literature review open government data in health sector.BMC public health · 2025Pooled it
- Responsible data sharing in international health research: a systematic review of principles and norms.BMC medical ethics · 2019Pooled it
- "Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.Wellcome open research · 2018Pooled it
- Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Pooled it
- Trial
- Ethics of Health Data Infrastructures: Toward Continuous Governance and Public Trust.Journal of medical Internet research · 2026Article
- The 'Ghost in the Shell' of NHS Patient Data Policies: News Media on care.data's Haunting of the General Practice Data for Planning and Research.Sociology of health & illness · 2026Article
- Consumer Perspectives on Trust in and Benefits of Artificial Intelligence in Health Care.JAMA network open · 2026Article
- Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.European journal of human genetics : EJHG · 2026Article
- Artificial intelligence in healthcare: a qualitative study exploring consumer perspectives.BMC medical ethics · 2026Article
- From "Black Box" to Learning System: Formative Viewpoint on Digital Health Governance for Childhood Cancer Information in Japan.JMIR formative research · 2026Article
- A survey of public attitudes toward secondary research governance oversight: Evidence from Singapore's TRUST platform.International journal of population data science · 2026Article
- Trust and trade: patient perspectives on the ethics of real-world data monetisation.Frontiers in health services · 2026Article
- Commercial or industrial use of mental health data for research: primer and best-practice guidelines from the DATAMIND patient/public Lived Experience Advisory Group.Frontiers in psychiatry · 2026Article
- "If it's gonnae make things better then I don't have any issue": Perspectives of People Who Use Drugs on the Use of Routinely-Collected Data for Research.International journal of population data science · 2026Article
- An Ethical Analysis of Public Attitudes towards Controlled Human Infection Studies in Singapore: Acceptability and Payment.Asian bioethics review · 2026Article
- Protecting patient privacy in tabular synthetic health data: a regulatory perspective.NPJ digital medicine · 2025Review
- Artificial Intelligence in Digital Self-Diagnosis Tools: A Narrative Overview of Reviews.Mayo Clinic proceedings. Digital health · 2025Review
- Beyond techno-optimism: four critical limitations in the UK's AI policy for health care.The British journal of general practice : the journal of the Royal College of General Practitioners · 2025Article
- Lessons for synthetic data from care.data's past.NPJ digital medicine · 2025Article
112 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.