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Authors: Zhe Wang ; Anthony Stell ; Jean Soto and Richard O. Sinnott

Affiliation: School of Computing and Information Systems, The University of Melbourne, Melbourne, VIC 3010, Australia

Keyword(s): e-Consent, Biomedical Registries, GDPR, ADDN, Type-1 Diabetes.

Abstract: e-Consent - the digital capture of a patient’s consent to be involved in medical research - is a feature of biomedical research that is becoming increasingly prevalent with the advance of digital technology to support clinical/biomedical research and targeted registries. Although there have been many reviews of e-consent over the past decade - evaluating aspects such as informed consent, engagement, comprehension and data security - there remain unanswered questions about how e-consent fits in the context of recent data legislation and privacy demands such as the European General Data Protection Regulation (GDPR). This paper outlines key aspects of e-consent in the context of GDPR and the specific demands placed on biomedical registries used for diverse research objectives. We present a practical realisation of GDPR e-Consent in the context of the Australasian Diabetes Data Network (ADDN) – the national type-1 diabetes registry for Australia.

CC BY-NC-ND 4.0

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Paper citation in several formats:
Wang, Z., Stell, A., Soto, J. and O. Sinnott, R. (2024). e-Consent in Biomedical Research Registries: A GDPR-Compliant Approach Explored in the Context of the Australasian Diabetes Data Network. In Proceedings of the 17th International Joint Conference on Biomedical Engineering Systems and Technologies - HEALTHINF; ISBN 978-989-758-688-0; ISSN 2184-4305, SciTePress, pages 45-55. DOI: 10.5220/0012327200003657

@conference{healthinf24,
author={Zhe Wang and Anthony Stell and Jean Soto and Richard {O. Sinnott}},
title={e-Consent in Biomedical Research Registries: A GDPR-Compliant Approach Explored in the Context of the Australasian Diabetes Data Network},
booktitle={Proceedings of the 17th International Joint Conference on Biomedical Engineering Systems and Technologies - HEALTHINF},
year={2024},
pages={45-55},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0012327200003657},
isbn={978-989-758-688-0},
issn={2184-4305},
}

TY - CONF

JO - Proceedings of the 17th International Joint Conference on Biomedical Engineering Systems and Technologies - HEALTHINF
TI - e-Consent in Biomedical Research Registries: A GDPR-Compliant Approach Explored in the Context of the Australasian Diabetes Data Network
SN - 978-989-758-688-0
IS - 2184-4305
AU - Wang, Z.
AU - Stell, A.
AU - Soto, J.
AU - O. Sinnott, R.
PY - 2024
SP - 45
EP - 55
DO - 10.5220/0012327200003657
PB - SciTePress

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