Consent and Retrospective Data Collection

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

Veröffentlichungen: Beitrag in BuchBeitrag in Buch/SammelbandPeer Reviewed

Abstract

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.

OriginalspracheEnglisch
TitelThe Law and Ethics of Data Sharing in Health Sciences
UntertitelPerspectives in Law, Business and Innovation
Redakteure*innenMarcelo Corrales Compagnucci, Timo Minssen, Mark Fenwick, Mateo Aboy, Kathleen Liddell
ErscheinungsortSingapore
Herausgeber (Verlag)Springer Nature Singapore Pte Ltd.
Seiten99-125
Seitenumfang27
ISBN (elektronisch)978-981-99-6540-3
ISBN (Print)978-981-99-6539-7
DOIs
PublikationsstatusVeröffentlicht - 20 Dez. 2023

Publikationsreihe

ReihePerspectives in Law, Business and Innovation
ISSN2520-1875

ÖFOS 2012

  • 505003 Europarecht
  • 505002 Datenschutz
  • 505010 Medizinrecht

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