Ethical, Legal, and Societal Issues (ELSI) play a central role for biobanks, which have to mediate between the interests of donors of human biospecimens and researchers.
The collection, storage and utilisation of human biospecimens and associated data must be ethically justifiable and legally secure. The area of "ELSI"(Ethical, Legal, and Societal Issues) is therefore of fundamental importance for biobanking. ELSI research and counselling focuses on topics such as the rights of sample donors, data protection and social discourse. The consent of sample donors is an essential prerequisite for the ethical and legal permissibility of biobank operations.
In Germany, the relevant body is the Biobanking Working Group of the Association of Medical Ethics Committees in the Federal Republic of Germany (AKEK), with which the German Biobank Network (GBN) coordinates on issues in this area.
On this page, the GBN provides a collection of information, sample texts and links to relevant organisations. The "Biobanks" overview page on the AKEK website also provides a very good introduction as well as numerous materials and templates.
Counselling and training
BBMRI-ERIC: ELSI Helpdesk BBMRI-ERIC: ELSI Knowledge Base BBMRI-ERIC: ELSI Events
Selected publications
- Geiger J. et al. GBA/GBN Position on the Feedback of Incidental Findings in Biobank-based Research: Consensus-based Workflow for Hospital-based Biobanks. Eur J Hum Genet (2023).
- Baber R. et al. Position Statement from the German Biobank Alliance on the Cooperation Between Academic Biobanks and Industry Partners. Biopreservation and Biobanking (2019).
- German Ethics Council: Human Biobanks for Research (2010).