Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU

Xengie Doan; Marcu Florea; Sarah E. Carter

doi:10.3233/FAIA230088

Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU

Xengie Doan, Marcu Florea, Sarah E. Carter

Research output: Chapter in Book/Conference proceedings/Edited volume › Chapter › Scientific › peer-review

Abstract

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.

Original language	English
Title of host publication	HHAI 2023
Subtitle of host publication	Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence
Editors	Paul Lukowicz, Sven Mayer, Janin Koch, John Shawe-Taylor, Ilaria Tiddi
Publisher	IOS Press
Pages	243 - 253
Number of pages	11
Volume	368
ISBN (Electronic)	9781643683942
DOIs	https://doi.org/10.3233/FAIA230088
Publication status	Published - 2023
Externally published	Yes
Event	2nd International Conference on Hybrid Human-Artificial Intelligence, HHAI 2023 - Munich, Germany Duration: 26 Jun 2023 → 30 Jun 2023

Publication series

Name	Frontiers in Artificial Intelligence and Applications
Volume	368
ISSN (Print)	0922-6389
ISSN (Electronic)	1879-8314

Conference

Conference	2nd International Conference on Hybrid Human-Artificial Intelligence, HHAI 2023
Country/Territory	Germany
City	Munich
Period	26/06/23 → 30/06/23

Keywords

e-Health
dynamic consent
privacy assistants
legal-ethical challanges

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.3233/FAIA230088

Cite this

Doan, X., Florea, M., & Carter, S. E. (2023). Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU. In P. Lukowicz, S. Mayer, J. Koch, J. Shawe-Taylor, & I. Tiddi (Eds.), HHAI 2023: Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence (Vol. 368, pp. 243 - 253). (Frontiers in Artificial Intelligence and Applications; Vol. 368). IOS Press. https://doi.org/10.3233/FAIA230088

Doan, Xengie ; Florea, Marcu ; Carter, Sarah E. / Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU. HHAI 2023: Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence. editor / Paul Lukowicz ; Sven Mayer ; Janin Koch ; John Shawe-Taylor ; Ilaria Tiddi. Vol. 368 IOS Press, 2023. pp. 243 - 253 (Frontiers in Artificial Intelligence and Applications).

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abstract = "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{\textquoteright}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.",

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author = "Xengie Doan and Marcu Florea and Carter, {Sarah E.}",

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Doan, X, Florea, M & Carter, SE 2023, Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU. in P Lukowicz, S Mayer, J Koch, J Shawe-Taylor & I Tiddi (eds), HHAI 2023: Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence. vol. 368, Frontiers in Artificial Intelligence and Applications, vol. 368, IOS Press, pp. 243 - 253, 2nd International Conference on Hybrid Human-Artificial Intelligence, HHAI 2023, Munich, Germany, 26/06/23. https://doi.org/10.3233/FAIA230088

Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU. / Doan, Xengie; Florea, Marcu; Carter, Sarah E.
HHAI 2023: Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence. ed. / Paul Lukowicz; Sven Mayer; Janin Koch; John Shawe-Taylor; Ilaria Tiddi. Vol. 368 IOS Press, 2023. p. 243 - 253 (Frontiers in Artificial Intelligence and Applications; Vol. 368).

Research output: Chapter in Book/Conference proceedings/Edited volume › Chapter › Scientific › peer-review

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AB - 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.

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Doan X, Florea M, Carter SE. Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU. In Lukowicz P, Mayer S, Koch J, Shawe-Taylor J, Tiddi I, editors, HHAI 2023: Augmenting Human Intellect - Proceedings of the 2nd International Conference on Hybrid Human-Artificial Intelligence. Vol. 368. IOS Press. 2023. p. 243 - 253. (Frontiers in Artificial Intelligence and Applications). doi: 10.3233/FAIA230088

Legal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU

Abstract

Publication series

Conference

Keywords

UN SDGs

Access to Document

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A Value-centered Exploration of Data Privacy and Personalized Privacy Assistants

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