ELSI

Resources for biobanks

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 use of human biospecimens and associated data must be ethically justifiable and legally secure. ELSI (Ethical, Legal and Societal Issues) is therefore of fundamental importance to biobanking. ELSI research and advice focuses on issues such as the rights of sample donors, data protection and public discourse. An essential prerequisite for the ethical and legal permissibility of biobanks is the consent of sample donors.  

In Germany, the Biobanking Working Group of the Working Group of Medical Ethics Committees in the Federal Republic of Germany (AKEK) is the central body, with which the German Biobank Node (GBN) liaises on issues in this field.

On this page, the GBN provides a collection of information, text templates 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.

Consulting and training

Templates (in German)

Selected publications

BBMRI-ERIC Webinar: BBMRI on FHIR

BBMRI.QM Academy
Webinar "BBMRI on FHIR"
3. December 2024, 10:00
online

A data structure is essential for data interoperability, alongside semantics and standard vocabularies that define data elements. Common data models enhance interoperability by structuring data from various sources. This session introduces the FHIR data exchange format for electronic healthcare data and provides examples of FHIR implementation in the BBMRI setting. The session is designed for Biobankers, data scientists and researchers, Quality Managers as well as healthcare professionals.

Speakers: Radovan Tomášik, Šimon Koňár

More information can be found here.

BBMRI-ERIC Webinar: BBMRI on FHIR

BBMRI.QM Academy
Webinar "BBMRI on FHIR"
3. December 2024, 10:00
online

A data structure is essential for data interoperability, alongside semantics and standard vocabularies that define data elements. Common data models enhance interoperability by structuring data from various sources. This session introduces the FHIR data exchange format for electronic healthcare data and provides examples of FHIR implementation in the BBMRI setting. The session is designed for Biobankers, data scientists and researchers, Quality Managers as well as healthcare professionals.

Speakers: Radovan Tomášik, Šimon Koňár

More information can be found here.

Questions?

germanbiobanknode@charite.de

Tel. +49. 30. 450 536 347

Fax +49. 30. 450 753 69 38

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