Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research

A Focus on the German Situation

authored by

Stefanie Hänold, Nikolaus Forgó, Dania Kobeissi, Iheanyi Nwankwo

Abstract

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.

Organisation(s)

Chair in IT law
Institute of Legal Informatics

Type

Review article

Journal

European Journal of Health Law

Volume

24

Pages

311-327

No. of pages

17

ISSN

0929-0273

Publication date

31.05.2017

Publication status

Published

Peer reviewed

Yes

ASJC Scopus subject areas

Health Policy, Law

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1163/15718093-12341415 (Access: Closed)