What Can We Do with the Data of Deceased People? A Normative Proposal

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...

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Detalhes bibliográficos
Autores: De Miguel Beriain, Iñigo, Duardo Sánchez, Aliuska, Castillo Parrilla, José Antonio
Formato: artículo
Fecha de publicación:2021
País:España
Recursos:Universidad del País Vasco
Repositorio:Addi. Archivo Digital para la Docencia y la Investigación
OAI Identifier:oai:addi.ehu.eus:10810/53672
Acesso em linha:http://hdl.handle.net/10810/53672
Access Level:acceso abierto
Palavra-chave:GDPR
PMDD
data of deceased people
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spelling What Can We Do with the Data of Deceased People? A Normative ProposalDe Miguel Beriain, IñigoDuardo Sánchez, AliuskaCastillo Parrilla, José AntonioGDPRPMDDdata of deceased peopleThe 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.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 788039Kluwer Law InternationalEuropean Commission202120212021info:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10810/53672reponame:Addi. Archivo Digital para la Docencia y la Investigacióninstname:Universidad del País VascoIngléseu-repo/grantAgreement/EC/H2020/788039https://kluwerlawonline.com/journalarticle/European+Review+of+Private+Law/29.5/ERPL2021041info:eu-repo/semantics/openAccess© 2021 Kluwer Law International BV, The Netherlands.oai:addi.ehu.eus:10810/536722026-06-18T09:23:17Z
dc.title.none.fl_str_mv What Can We Do with the Data of Deceased People? A Normative Proposal
title What Can We Do with the Data of Deceased People? A Normative Proposal
spellingShingle What Can We Do with the Data of Deceased People? A Normative Proposal
De Miguel Beriain, Iñigo
GDPR
PMDD
data of deceased people
title_short What Can We Do with the Data of Deceased People? A Normative Proposal
title_full What Can We Do with the Data of Deceased People? A Normative Proposal
title_fullStr What Can We Do with the Data of Deceased People? A Normative Proposal
title_full_unstemmed What Can We Do with the Data of Deceased People? A Normative Proposal
title_sort What Can We Do with the Data of Deceased People? A Normative Proposal
dc.creator.none.fl_str_mv De Miguel Beriain, Iñigo
Duardo Sánchez, Aliuska
Castillo Parrilla, José Antonio
author De Miguel Beriain, Iñigo
author_facet De Miguel Beriain, Iñigo
Duardo Sánchez, Aliuska
Castillo Parrilla, José Antonio
author_role author
author2 Duardo Sánchez, Aliuska
Castillo Parrilla, José Antonio
author2_role author
author
dc.contributor.none.fl_str_mv European Commission
dc.subject.none.fl_str_mv GDPR
PMDD
data of deceased people
topic GDPR
PMDD
data of deceased people
description 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.
publishDate 2021
dc.date.none.fl_str_mv 2021
2021
2021
dc.type.none.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv http://hdl.handle.net/10810/53672
url http://hdl.handle.net/10810/53672
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv eu-repo/grantAgreement/EC/H2020/788039
https://kluwerlawonline.com/journalarticle/European+Review+of+Private+Law/29.5/ERPL2021041
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
© 2021 Kluwer Law International BV, The Netherlands.
eu_rights_str_mv openAccess
rights_invalid_str_mv © 2021 Kluwer Law International BV, The Netherlands.
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Kluwer Law International
publisher.none.fl_str_mv Kluwer Law International
dc.source.none.fl_str_mv reponame:Addi. Archivo Digital para la Docencia y la Investigación
instname:Universidad del País Vasco
instname_str Universidad del País Vasco
reponame_str Addi. Archivo Digital para la Docencia y la Investigación
collection Addi. Archivo Digital para la Docencia y la Investigación
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,300719

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