The European Health Data Space as a Case Study

In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or...

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Bibliographic Details
Published inEthics & human research Vol. 46; no. 6; p. 29
Main Author Dove, Edward S
Format Journal Article
LanguageEnglish
Published United States 01.11.2024
Subjects
Electronic Health Records - ethics
Electronic Health Records - standards
Europe
Humans
Information Dissemination - ethics
Europe
health data sharing
health equity
translational bioethics
electronic health data
translational research ethics
translational science
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Summary:In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large-scale research infrastructures.
ISSN:2578-2363
DOI:10.1002/eahr.500228