ELSI community

GDPR and Health Research: from Regulation to daily practice

Parallel session of the Health-RI conference 2021

• Date: 4 March 2021 
• Time: 16:40-17:10

Summary

Many health researchers and supporting experts struggle with the interpretation and implementation of the GDPR in health research. The ELSI Community wishes to ease these, and other ethical, legal and societal, struggles. Of course, the Netherlands is not the only country where these struggles occur, so we may learn from other member states’ solutions. Petra Wilson and Robert Verheij will present a report they wrote with an international research group, on how this European Regulation, together with national legislation, is interpreted and implemented in European member states. The study found that while the GDPR is a much appreciated piece of legislation, variation in interpretation of the law and the range of national level legislation linked to its implementation have a negative impact on cross-border cooperation for care provision, healthcare system administration, public health and research.

Based on this presentation, Susanne Rebers, ELSI Community Manager, will shortly discuss some of the perspectives (European, national, local, practical, political, moral, etc) from which ELSI-issues can be discussed and/or tackled, and ask the audience for advice on which perspective(s) is/are most relevant or useful for the ELSI Community.

Organizers

Session chair: Susanne Rebers, NKI-AVL/ELSI Servicedesk/ELSI Community 

Support: Miriam Beusink, NKI-AVL/ELSI Servicedesk/ELSI Community 

Speakers:

• Petra Wilson, Managing Director at Health Connect Partners 
• Prof. dr. Robert Verheij,  Nivel, Netherlands Institute for Health Services Research TRANZO, Tilburg School of Social and Behavioral Sciences, Tilburg University.