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Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research: A Focus on the German Situation

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Analyses of biobank informed consent forms show that most of them do not include provisions for post-mortem use of biomaterial and data obtained from a donor who later dies. When these biobanks are confronted with issues of secondary use of these bioresources for research, especially when not completely anonymised, or when genetic research is involved which could reveal not only the identity of the donor, but also those of his biological relatives, they are often confused. Looking at the existing regulatory framework of biobanks, we conclude that no clear guidelines exist on this issue. Although the donor has died, his interests are not completely extinguished. Other interests — those of his biological relatives, researchers, and the public at large may also crop up. Legal reform and clear indications of post-mortem use in the consent document are needed to give donors the opportunity to consider all the implications.

Affiliations: 1: Institute for Legal Informatics, Leibniz Universität Hannover HannoverGermany

* Corresponding author’s e-mail: The research leading to these results has received funding from the European Union Seventh Framework Programme FP7/2007-2013 under grant agreement nos. 600841 (CHIC) and 270089 (p-medicine). The views expressed are those of the authors and not necessarily those of the European Commission. The authors would like to thank Julia Pfeiffenbring and Marc Stauch for their valuable input and kind support.

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