Title

Datentreuhänderschaft in der Biobank-Forschung - bdc/Audit

Project Director

Kollek, Regine

Project Associate

Paslack, Rainer

Participating Institutions

Research Group of Medicine and Neurosciences, FSP BIOGUM, in cooperation with the Independent Centre for Privacy Protection Schleswig-Holstein (ULD) (Thilo Weichert) and the Communication Systems Research Group of the Department of Computer Science at the University Kiel (Norbert Luttenberger)

Description

The objective of this interdisciplinary research collaboration (“bdc\AUDIT”) is the further development of methodology and criteria for the auditing of privacy protection management systems in Biobank-Research.

In modern biomedical research, biobanks are becoming increasingly important for the clarification of aetiology and for the development of new therapies. It is a matter of collecting human bodily substances (cells, tissue, blood and DNA), which are then linked with the personal data of its donor. Donors, who provide their bodily material and personal information for biobank-research, have a right to the protection of their privacy. An individual operating such a biobank is therefore obligated to develop a comprehensive data protection management-system.

The Independent Centre for Privacy Protection Schleswig-Holstein (ULD) already offers a procedure by which such data protection management-systems can be audited before their realization. The central work of the research collaboration “bdc\AUDIT“ is the further development of methodology and criteria, which underlie this auditing process and cover various data protection management-systems so that a high level of privacy protection can be guaranteed and a biobank operator can be assured that a designated data protection management-system fulfills legal and technical standards.

Project Beginning

1. October 2006

Project End

15. October 2008

Third-Party Funding

The Project is support by the Federal Ministry for Education and Research (BMBF).

Publications