Health research, consent and the GDPR exemption

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dc.contributor.author Donnelly, Mary
dc.contributor.author McDonagh, Maeve
dc.date.accessioned 2019-05-24T10:32:53Z
dc.date.available 2019-05-24T10:32:53Z
dc.date.issued 2019-04-24
dc.identifier.citation Donnelly, M. and McDonagh, M. (2019) 'Health research, consent and the GDPR exemption', European Journal of Health Law, 26(2), pp. 97-119. doi: 10.1163/15718093-12262427 en
dc.identifier.volume 26 en
dc.identifier.issued 2 en
dc.identifier.startpage 97 en
dc.identifier.endpage 119 en
dc.identifier.issn 0929-0273
dc.identifier.uri http://hdl.handle.net/10468/7975
dc.identifier.doi 10.1163/15718093-12262427 en
dc.description.abstract This article analyses the balance which the GDPR strikes between two important social values: protecting personal health data and facilitating health research through the lens of the consent requirement and the research exemption. The article shows that the normative weight of the consent requirement differs depending on the context for the health research in question. This more substantive approach to consent is reflected in the research exemption which allows for a more nuanced balancing of interests. However, because the GDPR articulates the exemption at an abstract and principled level, in practice the balance is struck at Member State level. Thus, the GDPR increases difficulties for EU cross-border health projects and impedes the policy goal of creating a harmonised regulatory framework for health research. The article argues that in order to address this problem, the European Data Protection Board should provide specific guidance on the operation of consent in health research. en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Brill Academic Publishers en
dc.relation.uri https://brill.com/view/journals/ejhl/26/2/article-p97_2.xml
dc.rights © 2019, Brill Koninklijke NV, Leiden. All rights reserved. en
dc.subject Data protection en
dc.subject Health research en
dc.subject Consent en
dc.subject Capacity en
dc.subject Research exemption en
dc.subject General Data Protection Regulation en
dc.subject GDPR en
dc.title Health research, consent and the GDPR exemption en
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Mary Donnelly, School Of Law, University College Cork, Cork, Ireland. +353-21-490-3000 Email: m.donnelly@ucc.ie en
dc.internal.availability Full text available en
dc.check.info Access to this article is restricted until 12 months after publication by request of the publisher. en
dc.check.date 2020-04-24
dc.date.updated 2019-05-24T10:16:18Z
dc.description.version Accepted Version en
dc.internal.rssid 483843761
dc.description.status Peer reviewed en
dc.identifier.journaltitle European Journal of Health Law en
dc.internal.copyrightchecked Yes
dc.internal.licenseacceptance Yes en
dc.internal.IRISemailaddress m.donnelly@ucc.ie en
dc.identifier.eissn 1571-8093


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