Paper published in a journal (Scientific congresses, symposiums and conference proceedings)
Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU
Doan, Xengie Cheng; Florea, Marcu; Carter, Sarah E.
2023In Frontiers in Artificial Intelligence and Applications, 368, p. 243 - 253
Peer reviewed


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Keywords :
e-health; dynamic consent; privacy assistant; legal-ethical challenges
Abstract :
[en] e-Health data is sensitive and consenting to the collection, processing, and sharing involves compliance with legal requirements, ethical standards, and appropriate digital tools. We explore two legal-ethical challenges: 1) What are the scope and requirements of digital health data consent? 2) What are the legal-ethical reasons for obtaining consent beyond the GDPR’s legal basis, and how might such consent be obtained? We then propose human-centered solutions to help navigate standards of ethical and legal consent across the EU, purposefully addressing those use cases to compensate for human difficulties in managing consent without clear guidelines. These solutions – including ISO standards, ontologies, consent mechanisms, value-centered privacy assistants, and layered dynamic consent platforms – complement and aid humans to help uphold ethical and rigorous consent.
Research center :
Interdisciplinary Centre for Security, Reliability and Trust (SnT) > IRiSC - Socio-Technical Cybersecurity
Disciplines :
Engineering, computing & technology: Multidisciplinary, general & others
Author, co-author :
Doan, Xengie Cheng ;  University of Luxembourg > Interdisciplinary Centre for Security, Reliability and Trust (SNT) > IRiSC
Florea, Marcu;  Rijksuniversiteit Groningen - RUG
Carter, Sarah E.;  University of Galway > Data S​cience Institute and the Discipline of Philosophy ; SFI Centre for Research Training in Digitally​-Enhanced Reality
External co-authors :
Language :
Title :
Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU
Publication date :
Event name :
2nd International Conference on Hybrid Human-Artificial Intelligence
Event place :
Munich, Germany
Event date :
26-30 June 2023
Audience :
Journal title :
Frontiers in Artificial Intelligence and Applications
Publisher :
IoS Press
Volume :
Pages :
243 - 253
Peer reviewed :
Peer reviewed
Focus Area :
Computational Sciences
Name of the research project :
LeADS, KnowGraphs, d-Real
Funders :
EU H2020 projects LeADS (Grant ID:956562) and KnowGraphs (Grant ID:860801) with SFI CRT d-real (Grant No. 18/CRT/6224)
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since 04 August 2023


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