Abstract
This chapter argues that the EHDS proposes an incomplete ‘open commons’ – a type of governance of shared resources whereby users have a symmetric freedom to access the resource – for the secondary use of health data for scientific research. The EHDS entails a paradigm shift from a consent-based to a public interest approach for the regulation of secondary uses of data for research purposes. Although some of the innovations of the EHDS are welcome additions, to fully take advantage of the Regulation, it is necessary to set rules to determine what constitutes a public interest and how the benefits arising from the use of health data ought to be distributed for the societal common good. Drawing on relational theories of data governance and data solidarity, this chapter takes on this endeavour and presents a proposal to complete the EHDS commons model for the governance of health data for scientific research.
| Original language | English |
|---|---|
| Title of host publication | The European Health Data Space |
| Subtitle of host publication | Examining A New Era in Data Protection |
| Editors | Santa Slokenberga, Katharina Ó Cathaoir, Mahsa Shabani |
| Place of Publication | London |
| Chapter | 8 |
| Pages | 162-178 |
| Number of pages | 17 |
| Edition | 1 |
| ISBN (Electronic) | 9781003544111 |
| DOIs | |
| Publication status | Published - 6 Mar 2025 |
Bibliographical note
Publisher Copyright:© 2025 selection and editorial matter, Santa Slokenberga, Katharina Ó Cathaoir and Mahsa Shabani; individual chapters, the contributors.
Erasmus Sectorplan
- Sector plan SSH-Breed
- Sector plan Recht-Public and Private Interests