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The European Health Data Space as a Case Study
1Professor of law at the School of Law and Criminology at Maynooth University in Ireland.
Ethics & Human Research
|November 13, 2024
Summary
The European Health Data Space (EHDS) aims to facilitate electronic health data sharing for patients and research. This analysis reviews its contentious aspects, highlighting the need for translational bioethics in large-scale research infrastructures.
Area of Science:
- Bioethics
- Health Policy
- Data Governance
Background:
- The European Commission proposed the European Health Data Space (EHDS) in May 2022.
- The EHDS is a legislative framework for sharing electronic health data.
Purpose of the Study:
- To review contentious features of the EHDS legislative proposal.
- To illustrate the need for a translational bioethics approach for research infrastructures.
Main Methods:
- Review of the latest version of the EHDS legislative proposal.
- Analytical critique of contentious aspects.
Main Results:
- Identification of several contentious features within the EHDS proposal.
- The EHDS serves as a case study for bioethical considerations in data sharing.
Conclusions:
- A translational bioethics approach is crucial for addressing challenges in large-scale health data infrastructures.
- Critical analysis of EHDS features underscores the importance of ethical frameworks in health data governance.
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