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What Will Become Of Our Health Data When We Die? The European Health Data Space Might Have an Answer

Anastasiya Kiseleva, Iñigo de Miguel Beriain


Currently, the EU legal regime for data of deceased individuals lacks clarity and harmonisation. This type of data is explicitly excluded from the scope of the GDPR and no alternative for its protection and usage is suggested at the EU level. The Member States developed their own rules, but the divergences between them prevents the creation of the single market promoted in the EU Data Strategy. While the lack of a harmonised legal framework concerns all data of deceased individuals, health data has a special status. Its increased sensitivity and high utility for developing healthcare and fostering medical research makes the need for a harmonised EU approach more challenging and more pressing. In this article, we argue that the European Health Data Space may be a game changer for the health data of deceased individuals. Through an analysis of the EHDS Proposal, its definitions, and legal regimes, we argue that the health data of those who have passed away should be considered non-personal and should be mainly covered by the secondary use regime. We demonstrate that an elaborated architecture of the EHDS proposal provides a rather optimal legal solution for the poorly regulated matter.

Anastasiya Kiseleva is a PhD candidate under the EUTOPIA program at Vrije Universiteit Brussel (research groups Law, Science, Technology and Society (LSTS) and its subgroup Health and Ageing Law Lab (HALL)) and at CY Cergy Paris University (ETIS research lab). For correspondence: <>. Iñigo de Miguel Beriain is a professor at the University of the Baque Country (UPV/EHU), RG Law and the Human Genome, Leioa, Spain; Ikerbasque, Basque Foundation for Science, Bilbao, Spain. Anastasiya Kiseleva would like to acknowledge the support received from the EUTOPIA PhD co-tutelle program 2020. Iñigo de Miguel Beriain would like to acknowledge the support received from the Government of the Basque Country, Grant "Subvenciones a Grupos de Investigación IT1541-22. This research has also received funding from the European Research Council under the European Union’s Horizon 2020 research and innovation program (Project BCLLATLAS, grant agreement 810287).


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