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

Anastasiya Kiseleva, Iñigo de Miguel Beriain

European Health & Pharmaceutical Law Review, Volume 7 (2023), Issue 1, Page 16 - 28

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.

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