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Open consent and informational obligations: Can biobanks still collect information prospectively under the data protection regulation?

: Hallinan, Dara

Kimppa, Kai K. (Ed.) ; International Federation for Information Processing -IFIP-, Technical Committee 9, Computers and Society:
11th Human Choice and Computers International Conference, HCC 2014. Work-in-Progress Proceedings : July 30th - August 1st, 2014, Turku, Finland
Turku, Finland: Turku Centre for Computer Science, 2014 (TUCS Lecture Notes 23)
ISBN: 978-952-12-3095-0
Human Choice and Computers International Conference (HCC) <11, 2014, Turku>
Fraunhofer ISI ()
biobanks; bioethics; consent; data; data protection; genetic data; genetics; Genomics; ICT; research

This article focuses on whether a certain form of consent used by biobanks - open consent - is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation is the culmination of this reform and, if voted into law, will constitute a new legal framework for biobanking. However, the Regulation puts strict conditions on consent - in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these conditions. However, the Regulation was not drafted with biobanking in mind. Accordingly, an argument could be made that the applicable consent requirements should be rethought.