ELSI

New technologies are set to change the face of biobanking in the years ahead.

This raises many ethical, legal and social issues that need to be resolved in dialogue with scientists, patients, data protection authorities and the public.

“My genes are mine!”

The use of genomic data from probands and patients
Public workshop | 3 May 2018 | Berlin

Should biomaterial donors be informed of a BRCA mutation, which could trigger breast cancer, if this is discovered as an incidental finding in a study, for example? And if so, how should this happen? This was among the questions discussed by the 120 participants attending the workshop held by the German Biobank Node (GBN) in Berlin on 3 May entitled “Meine Gene gehören mir! Nutzung genomischer Daten von Probanden und Patienten” (“My genes are mine! The use of genomic data from probands and patients”). It was the first time that an interdisciplinary exchange took place between experts on this complex issue. Here, you can find the press release as well as the workshop programme.

 

Audio presentations of the talks of all workshop speakers are available below (in German).
Host: Burkhard Plemper

Grußwort und Einführung
Prof. Dr. Michael Hummel
 

 

Gilt das Gendiagnostikgesetz - für Zusatzbefunde - in der Forschung?
Prof. Dr. Henning Rosenau

 

Wie entstehen Zusatzbefunde?
Dr. Dieter Beule
 

 

Herausforderungen aus Sicht der Forschung
Prof. Dr. Dr. Eva Winkler

 

Herausforderungen aus ethischer und rechtlicher Sicht
Prof. Dr. Jochen Taupitz

 

Hürden und Lösungsansätze bei der Mitteilung von Zufallsergebnissen
Dr. Gunthard Stübs

 

Humangenetische Bewertung von Zusatzbefunden aus der Forschung
Prof. Dr. Uwe Kornak

 

Biobank Popgen
Prof. Dr. Michael Krawczak
 

 

UK-Biobank
Prof. Dr. Nils Hoppe


 

 

Die informierte Entscheidung - Herausforderungen der Patientenaufklärung in Bezug auf Zusatzbefunde
Dr. Stefanie Houwaart

 

Podiumsdiskussion
TeilnehmerInnen: Prof. Dr. Nils Hoppe, Dr. Stefanie Houwaart, Prof. Dr. Michael Krawczak, Dr. Gunthard Stübs, Prof. Dr. Jochen Taupitz, Prof. Dr. Dr. Eva Winkler

 

Questions?

germanbiobanknode@charite.de

Tel. +49. 30. 450 536 347


Fax +49. 30. 450 753 69 38

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