ArticleEuropean journal of human genetics : EJHG2024
Ethical and social reflections on the proposed European Health Data Space.
Article in European journal of human genetics : EJHG, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed.
- Towards best practice recommendations: Perspectives from Australian GPs to inform the use of general practice data for research - A modified Delphi study.The European journal of general practice · 2026Article
- Can Canada learn from the European Health Data Space?Canadian journal of public health = Revue canadienne de sante publique · 2026Article
- Justice in the governance of personal health data spaces: stakeholder perspectives in Belgium.BMC medical ethics · 2026Article
- HealthData@MAD-R&I: Protocol for Design and Development of a Regional Health Data Infrastructure to Enable Secondary Use of Health Data in Research and Innovation.JMIR research protocols · 2026Article
- The Ethics of Leveraging Routinely Collected Patient Data for AI Development: Mixed Methods Study.Journal of medical Internet research · 2026Article
- A call for action to strengthen stakeholder readiness for ICF data exchange in European health data space: a structured narrative review.Frontiers in public health · 2026Review
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Autonomy over authority: the role of autonomous motivation in law compliance.Motivation and emotion · 2026Article
- Making genomic data FAIR through effective Data Portals.Scientific data · 2025Article
- Digital Innovation in Asthma Management in Italy: Results From the "Confronting Asthma Survey".Clinical and translational allergy · 2025Article
- From concept to approval: human genomic data integration with population observational data - insights from a Belgian pilot study.Archives of public health = Archives belges de sante publique · 2025Article
- The European Health Data Space: an opportunity to strengthen citizen rights and engage citizens in health data governance.Frontiers in medicine · 2025Article
- Health disparities and selection bias in obtaining broad consent in a general practitioner setting.Frontiers in medicine · 2025Article
- How the world of biobanking is changing with artificial intelligence.Frontiers in digital health · 2025Review
- Secondary use under the European Health Data Space: setting the scene and towards a research agenda on privacy-enhancing technologies.Frontiers in digital health · 2025Article
- The European Health Data Space can be a boost for research beyond borders.Nature medicine · 2024Article
- Article
- Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants.Frontiers in medicine · 2024Article
- Article
- Lessons from federated networks for implementing the European health data space. Empirical study.Digital healthArticle
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
Abstract
The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space.
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What OpenQuestion holds
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.