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.

Biobanks face the challenge of reconciling the interests of medical research and scientific freedom with the rights and interests of biospecimen donors. Many questions of ethical relevance need to be answered including how to protect the donor’s data from privacy breaches and how to handle incidental findings in research. The answers to these questions will have to be integrated into the governance structures of the biobanks.

The aim of this work package is to:

  • identify legal and ethical aspects or issues, where action is needed,
  • determine the need to adapt data protection concepts and “Broad Consent” patient consents within the German Biobank Alliance (GBA), also considering the EU General Data Protection Regulation (EU GDPR),
  • extend and harmonise existing data protection and consent concepts of biobanks in Germany in cooperation with partner initiatives (DZG, NAKO, MII).



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