International Sharing of Personal Health Data for Research

Data sharing is an essential part of modern international research. In medical research, pooled data on individuals are often needed to obtain sufficiently large study numbers and to ensure that research conducted elsewhere is also relevant for patients in Europe. Ultimately, global sharing of health data is key to maximise the individual and societal benefits to be obtained from the contribution of research participants.

Currently, the transfer of personal health data to non-EU/EEA countries is being hampered by the EU’s General Data Protection Regulation 2016/679 (GDPR). When institutions in other countries have statutory conflicts that prevent them from signing the required contracts under the GDPR, there is presently no workable legal mechanism for sharing pseudonymised health data for public sector research.

In the report “International sharing of personal health data for research”, ALLEA, the European Academies’ Science Advisory Council (EASAC), and the Federation of European Academies of Medicine (FEAM) discuss how global sharing of health data benefits public research, describe the challenges imposed by the GDPR, and provide possible solutions through adapting or expanding the existing legal framework.