dc.contributor.author | De Miguel Beriain, Iñigo | |
dc.contributor.author | Duardo Sánchez, Aliuska | |
dc.contributor.author | Castillo Parrilla, José Antonio | |
dc.date.accessioned | 2021-10-29T18:06:42Z | |
dc.date.available | 2021-10-29T18:06:42Z | |
dc.date.issued | 2021-10 | |
dc.identifier.citation | European Review of Private Law 29(5) : 785-806 (2021) | es_ES |
dc.identifier.issn | 0928-9801 | |
dc.identifier.issn | 1875-8371 | |
dc.identifier.uri | http://hdl.handle.net/10810/53672 | |
dc.description.abstract | 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 complicated,
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 wellknown
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. | es_ES |
dc.description.sponsorship | 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 | es_ES |
dc.language.iso | eng | es_ES |
dc.publisher | Kluwer Law International | es_ES |
dc.relation | eu-repo/grantAgreement/EC/H2020/788039 | es_ES |
dc.rights | info:eu-repo/semantics/openAccess | es_ES |
dc.subject | GDPR | es_ES |
dc.subject | PMDD | es_ES |
dc.subject | data of deceased people | es_ES |
dc.title | What Can We Do with the Data of Deceased People? A Normative Proposal | es_ES |
dc.type | info:eu-repo/semantics/article | es_ES |
dc.rights.holder | © 2021 Kluwer Law International BV, The Netherlands. | es_ES |
dc.relation.publisherversion | https://kluwerlawonline.com/journalarticle/European+Review+of+Private+Law/29.5/ERPL2021041 | es_ES |
dc.contributor.funder | European Commission | |
dc.departamentoes | Derecho publico | es_ES |
dc.departamentoeu | Zuzenbide publikoa | es_ES |