The lead authors of the ALLEA, FEAM and EASAC report ‘International Sharing of Personal Health Data for Research’ published a Comment in the journal Nature Medicine on 2 August. The piece summarises the key takeaways of the joint report, including an assessment of the legal challenges in sharing personal health data with researchers outside the EU/European Economic Area (EEA).
The text highlights that “COVID-19 has shown that international collaborations and global data sharing are essential for health research, but legal obstacles are preventing data sharing for non–pandemic-related research among public researchers across the world, with potentially damaging effects for citizens and patients.”
According to the authors, “over the past two years, it has become apparent that challenges emerge for the sharing of data with public-sector researchers in a majority of countries outside of the EEA, as only a few decisions stating that a country offers an adequate level of data protection have so far been issued by the European Commission. This is a problem, for example, with researchers at federal research institutions in the United States. Transfers to international organizations such as the World Health Organization are similarly affected. Because these obstacles ultimately affect patients as beneficiaries of research, solutions are urgently needed.”
The Comment is based on the joint report which was driven by discussions between experts from across Europe, who were nominated by member academies of ALLEA, EASAC, and FEAM and acted in an individual capacity, bringing together all relevant disciplines and expertise for this topic of great shared importance for all.
The authors of the Comment are Heidi Beate Bentzen, Rosa Castro, Robin Fears, George Griffin, Volker ter Meulen and Giske Ursin. The full comment can be read here. The joint report, information about the project and an interview with Robin Fears (EASAC) on the topic are also accessible on the ALLEA website.