Equilibre entre droits du patient et valeur sociétale des données médicales
(2025) Droit hospitalier. Décodage juridique au départ des réalités hospitalières — ISBN: [978-2-8079-4796-2], p. 917-953, published
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- (en) The preservation of medical data raises critical issues at the intersection of individual rights, scientific needs, and personal or collective relationships to the past. The loss or destruction of such data can have detrimental consequences in various situations: for patients who require access to their own health information to ensure continuity of care; for researchers who rely on historical and/or longitudinal datasets (e.g., in epidemiology, demography, history); and for individuals seeking answers about their personal or family history. Drawing on these three cases, this article examines the archival and legal framework governing the preservation and access to medical data—particularly the General Data Protection Regulation (GDPR) and regulations relating to medical confidentiality. It explores the tensions, trade-offs, and potential balances between protecting patients’ rights and safeguarding the informational value of medical data—whether memorial, scientific, or therapeutic—in the public interest, both today and for future generations.
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Citations
de Terwangne, C., François, A., Roekens, A., & Van Gyseghem, J.-M. (2025). Equilibre entre droits du patient et valeur sociétale des données médicales. In Colson, Pauline, George, Florence & Lambert, Charlotte (ed.), Droit hospitalier. Décodage juridique au départ des réalités hospitalières (p. p. 917-953). Larcier-Intersensia. https://hdl.handle.net/2078.5/273313