ArticleBMC medical ethics2022
Ownership of individual-level health data, data sharing, and data governance.
Article in BMC medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.
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
24 citing papers in PubMed.
- Moral distress among nurses: an umbrella review of its prevalence, severity, causes, and consequences.BMC nursing · 2026Article
- Available guidance for ethical challenges in learning health systems: an integrative literature review.Health research policy and systems · 2026Review
- Towards better Diabetes Data Rights: Data protection, data 'ownership', and developing a patient charter.Diabetic medicine : a journal of the British Diabetic Association · 2026Article
- Unlocking the potential of Asian genomic data: a collaborative framework for precision medicine innovation.GigaScience · 2026Review
- A nursing perspective on human-AI collaboration in personalized breast cancer care pathways.Frontiers in oncology · 2026Article
- Health data sovereignty: pinpointing conceptual ambiguities.Frontiers in digital health · 2026Article
- Toward Setting Minimum and Optimal Data to Report for Malaria Molecular Surveillance with Targeted Sequencing: The "What" and "Why".The American journal of tropical medicine and hygiene · 2025Article
- Empowering cancer research in Europe: the EUCAIM cancer imaging infrastructure.Insights into imaging · 2025Article
- Towards Integrated and Quality-assured Health Service Delivery: Making a Case for Health Smart Card in the Philippines.Acta medica Philippina · 2025Article
- Data for public health analysis in the ASEAN countries: a scoping review protocol.BMJ public health · 2025Article
- The Representational Challenge of Integration and Interoperability in Transformed Health Ecosystems.Journal of personalized medicine · 2024Article
- Big data research is everyone's research-Making epilepsy data science accessible to the global community: Report of the ILAE big data commission.Epileptic disorders : international epilepsy journal with videotape · 2024Review
- Data Ownership in the AI-Powered Integrative Health Care Landscape.JMIR medical informatics · 2024Article
- Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization.BMC medical ethics · 2024Article
- Sharing sensitive data in life sciences: an overview of centralized and federated approaches.Briefings in bioinformatics · 2024Review
- Who owns (or controls) health data?Scientific data · 2024Article
- Review
- COLLAGENE enables privacy-aware federated and collaborative genomic data analysis.Genome biology · 2023Article
- Future pHealth Ecosystem-Holistic View on Privacy and Trust.Journal of personalized medicine · 2023Article
- Whole Person Modeling: a transdisciplinary approach to mental health research.Discover mental health · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
backgroundThe ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership. MAIN BODY: In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, and conceptual issues. We argue that undifferentiated application of neither private ownership nor public ownership will allow us to resolve all the problems associated with effective, equitable, and ethical use of data. We suggest that, instead of focusing on data ownership, we should focus on the institutional and procedural aspects of data governance, such as using Data Access Committees (DACs) or equivalent managed access processes, which can balance the elements of these two ownership frameworks.
conclusionUndifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society.
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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.