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.
The project will exemplify how data sharing adds value to EU research and its translation to policy, innovation and practice, and it will clarify principles and options for reform taking into consideration the legal, ethical, and in particular privacy implications.
This project is the first tripartite collaboration between FEAM, EASAC and ALLEA, and will benefit from the complementary expertise joined in these networks. 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”).
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. ALLEA has significant interests in sharing and using data (e.g. the report “Flourishing in a data-enabled society”) and will augment project strengths across the social sciences and humanities.
The joint statement is scheduled for completion during 2020. Written evidence is invited for consideration by the Working Group. Please send any inputs to firstname.lastname@example.org.