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See detailLegal-Ethical Challenges and Technological Solutions to e-Health Data Consent in the EU
Doan, Xengie Cheng UL; Florea, Marcu; Carter, Sarah E.

in Frontiers in Artificial Intelligence and Applications (2023), 368

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 ... [more ▼]

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. [less ▲]

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See detailContext, Prioritization, and Unexpectedness: Factors Influencing User Attitudes About Infographic and Comic Consent
Doan, Xengie Cheng UL; Selzer, Annika; Rossi, Arianna UL et al

in Web Conference Companion Volume (ACM) (2022, April 26)

Being asked to consent to data sharing is a ubiquitous experience in digital services - yet it is very rare to encounter a well designed consent experience. Considering the momentum and importance of a ... [more ▼]

Being asked to consent to data sharing is a ubiquitous experience in digital services - yet it is very rare to encounter a well designed consent experience. Considering the momentum and importance of a European data space where personal information freely and easily flows across organizations, sectors and Member States, solving the long-discussed thorny issue of "how to get consent right" cannot be postponed any further. In this paper, we describe the first findings from a study based on 24 semi-structured interviews investigating participants’ expectations and opinions toward consent in a data sharing scenario with a data trustee. We analyzed various dimensions of a consent form redesigned as a comic and an infographic, including language, information design, content and the writer-reader relationship. The results provide insights into the complexity of elements that should be considered when asking individuals to freely and mindfully disclose their data, especially sensitive information. [less ▲]

Detailed reference viewed: 163 (41 UL)