This webinar was delivered in June 2025 by Daniel Groos, legal researcher at the HEAP Consortia partner Lygature for their Health Law, Privacy and Ethics portfolio and coordinator of the EHEN Ethics and Law Working Group. His research is focused on privacy and data protection in large-scale research consortia.
Daniel worked with researchers from the HEAP pilot projects on appropriate models for data governance and data management. He covers lessons from specific legal tasks, including strategies for the safe transfer of data to third countries and the development of a sustainable governance framework, using the HEAP pilot projects an example. The webinar covers the following topics:
• Transnational collaborative health research, the legal complexities that can arise in connection with this, and how to address this.
• Exposome research in the context of the collective right to health, as opposed to individual rights over personal data.
• The upcoming European Health Data Space (EHDS), which promises to foster the re-use of health data. Daniel will discuss the concept of consent as a legal basis for processing health data, in the light of the EHDS.
