SynthesisBMC medical ethics2019
Responsible data sharing in international health research: a systematic review of principles and norms.
Synthesis in BMC medical ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers.
What it found
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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.
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Who cites it
61 citing papers in PubMed.
- Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Justice in the governance of personal health data spaces: stakeholder perspectives in Belgium.BMC medical ethics · 2026Article
- Ethical Considerations in Patient Privacy and Data Handling for AI in Cardiovascular Imaging and Radiology.Journal of imaging informatics in medicine · 2026Review
- Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Article
- Crossing borders securely: synthetic data and federated networks for privacy-preserving access to real-world data and emerging use cases.NPJ digital medicine · 2025Review
- SPIRIT 2025 explanation and elaboration: updated guideline for protocols of randomised trials.BMJ (Clinical research ed.) · 2025Article
- Augmenting Insufficiently Accruing Oncology Clinical Trials Using Generative Models: Validation Study.Journal of medical Internet research · 2025Article
- Perspective review: Will generative AI make common data models obsolete in future analyses of distributed data networks?Therapeutic advances in drug safety · 2025Review
- Privacy-preserving federated data access and federated learning: Improved data sharing and AI model development in transfusion medicine.Transfusion · 2025Review
- A GPT-reinforced social robot for patient communication: a pilot study.Frontiers in digital health · 2025Article
- Reusing routine electronic health record data for nationwide COVID-19 surveillance in nursing homes: barriers, facilitators, and lessons learned.BMC medical informatics and decision making · 2024Article
- Ethics practices associated with reusing health data: an assessment of patient registries.BMC medicine · 2024Article
- Designing for data sharing: Considerations for advancing health equity in data management and dissemination.Translational behavioral medicine · 2024Article
- Exploring barriers and ethical challenges to medical data sharing: perspectives from Chinese researchers.BMC medical ethics · 2024Article
- Influence of next-generation artificial intelligence on headache research, diagnosis and treatment: the junior editorial board members' vision - part 1.The journal of headache and pain · 2024Review
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- The Costs of Anonymization: Case Study Using Clinical Data.Journal of medical Internet research · 2024Article
- Toward Fairness, Accountability, Transparency, and Ethics in AI for Social Media and Health Care: Scoping Review.JMIR medical informatics · 2024Article
- Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers.JMIR pediatrics and parenting · 2024Article
1 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
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLarge-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation (GDPR), the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we set out to explore relevant ethical principles and norms.
methodsWe performed a systematic review of literature and ethical guidelines for principles and norms pertaining to data sharing for international health research.
resultsWe observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement. However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used.
conclusionsWhile providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust.
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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.