Consent and Retrospective Data Collection

Autor(en)

Katarzyna Barud, Tima Otu Anwana, Marie-Catherine Wagner, Michael Cepic, Emily Johnson, Max Königseder

Abstrakt

The secondary use of health data offers great potential for health research. Technological developments, for instance the progress in the field of artificial intelligence, have improved the reusability of datasets. However, the GDPR and ethical guidelines regularly restrict the reuse of personal data when the data subject has not given their informed or explicit consent. In retrospective studies, where researchers use personal data and sensitive data from previous medical examinations, the retrospective collection of the patient's consent can be challenging. This chapter will focus on the potential legal and practical hurdles associated with obtaining consent from the data subject for a new processing purpose. In addition, it will present the ethical considerations associated with consent and retrospective data collection in health and medical research. This chapter will discuss several Horizon 2020 funded research projects in the areas of health and medical research. These research projects will be used as practical examples to demonstrate the issues faced with consent as a legal basis in retrospective research.

Organisation(en)

Institut für Innovation und Digitalisierung im Recht

Seiten

99-125

Anzahl der Seiten

27

DOI

https://doi.org/10.1007/978-981-99-6540-3_7

Publikationsdatum

12-2023

Peer-reviewed

Ja

ÖFOS 2012

505003 Europarecht, 505002 Datenschutz, 505010 Medizinrecht

Schlagwörter

ASJC Scopus Sachgebiete

Law, Management of Technology and Innovation

Link zum Portal

https://ucrisportal.univie.ac.at/de/publications/consent-and-retrospective-data-collection(bfe00137-131d-4fb7-8f72-8dd7a4292bc6).html