Consent and Retrospective Data Collection

Tima Otu Anwana, Katarzyna Barud, Michael Cepic, Emily Johnson, Max Königseder and Marie-Catherine Wagner
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Tima Otu Anwana: University of Vienna
Katarzyna Barud: University of Vienna
Michael Cepic: University of Vienna
Emily Johnson: University of Vienna
Max Königseder: MLL Meyerlustenberger Lachenal Froriep AG
Marie-Catherine Wagner: University of Vienna

A chapter in The Law and Ethics of Data Sharing in Health Sciences, 2024, pp 99-125 from Springer

Abstract: Abstract The secondary use of health dataHealth data offers great potential for health research. Technological developments, for instance the progress in the field of artificial intelligenceArtificial intelligence (AI), 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 consentConsent. In retrospective studies, where researchers use personal data and sensitive data from previous medical examinations, the retrospective collection of the patient's consentConsent 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 consentConsent and retrospective data collectionRetrospective 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.

Keywords: Consent; Data protection; Ethics; Further processing; Medical research; Retrospective data collection (search for similar items in EconPapers)
Date: 2024
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DOI: 10.1007/978-981-99-6540-3_7

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