TY  - JOUR
A1  - Miguel Beriain, Iñigo de
A1  - Duardo Sánchez, Aliuska
A1  - Castillo Parrilla, José Antonio
A2  - Tronnier, Frédéric
T1  - What can we do with the data of deceased people? A normative proposal
T2  - European review of private law = Revue européenne de droit privé = Europäische Zeitschrift für Privatrecht
N2  - The health and genetic data of deceased people are a particularly important asset in the field of biomedical research. However, in practice, using them is compli- cated, as the legal framework that should regulate their use has not been fully developed yet. The General Data Protection Regulation (GDPR) is not applicable to such data and the Member States have not been able to agree on an alternative regulation. Recently, normative models have been proposed in an attempt to face this issue. The most well- known of these is posthumous medical data donation (PMDD). This proposal supports an opt-in donation system of health data for research purposes. In this article, we argue that PMDD is not a useful model for addressing the issue at hand, as it does not consider that some of these data (the genetic data) may be the personal data of the living relatives of the deceased. Furthermore, we find the reasons supporting an opt-in model less convincing than those that vouch for alternative systems. Indeed, we propose a normative framework that is based on the opt-out system for non-personal data combined with the application of the GDPR to the relatives’ personal data.
Y1  - 2021
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/64580
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-645803
UR  - https://kluwerlawonline.com/journalarticle/European+Review+of+Private+Law/29.5/ERPL2021041
SN  - 1875-8371
N1  - This work was supported by PANELFIT, which has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 788039.
N1  - This article was first published in the EUROPEAN REVIEW OF PRIVATE LAW (Vol.29, Nr. 5-2021, [785-806], 2021 Ⓒ Kluwer Law International BV, The Netherlands).
VL  - 29
IS  - 5
SP  - 785
EP  - 806
PB  - Kluwer
CY  - Dordrecht
ER  -