International Transfer of Health Data for Research

Data sharing is an essential part of modern research. Within medical research, pooled data on individuals are often needed to ensure sufficiently large study numbers, and to replicate findings and identify complex pathways. The EU General Data Protection Regulation 2016/679 (GDPR) has harmonised legislation on the processing of personal data within the European Economic Area (EAA, which comprises EU member states plus Iceland, Liechtenstein, and Norway). However, substantial challenges remain for data sharing outside of the EEA. In particular, there is a lack of non-consent based transfer mechanisms that can be used for sharing personal data with public institutions in other countries such as the USA. 

This project is the first tripartite collaboration between ALLEA, EASAC, and FEAM and will benefit from the complementary expertise joined in these networks. ALLEA has significant interest in sharing and using data (e.g. “Flourishing in a data-enabled society” and  “Sustainable and FAIR data sharing in the Humanities”) and will ensure that the project takes a broad and interdisciplinary perspective. EASAC has a history of interest in optimising the use of health research data, and worked together with FEAM in providing evidence on the value of research and the need for collaborative activity, in previous discussions with the European Commission and Parliament (e.g. ‘’Protecting health and scientific research in the Data Protection Regulation’’). FEAM has collaborated with numerous health stakeholders to issue recommendations in view of the discussions preceding the GDPR (e.g. “Ensuring a healthy future for scientific research through the Data Protection Regulation”).  

ALLEA, jointly with FEAM and EASAC, published an open letter to the EU Health Commissioner on the Implications of the ECJ decision on the “Shrems II” for international sharing of health data for research.