A Two-Level Biobank Data Protection Concept for Project-Driven Human Sample Collections.

Biopreserv Biobank

Institute for Prevention and Occupational Medicine of the German Social Accident Insurance, Institute of the Ruhr University Bochum (IPA), Bochum, Germany.

Published: August 2019

Legal and ethical demands for more transparent and strict data protection measures to enhance research participant privacy have grown with an increasing number of human biobanks providing biomaterial collections long term for unspecified future research questions. The design of a data protection scheme that minimizes the risk of donor reidentification and promotes biomaterial and data use in research is a big challenge to all kinds of human biobanks. Yet, there is a lack of publications which address this basic building block of a biobank. In this study, we present the data protection concept of our project driven, stand-alone biobank, focusing on meeting two biomaterial and data management areas simultaneously: operation of primary research projects involved in sample collection and long-term provision of biomaterial for future research purposes. The concept is based on national and international laws and ethical demands. Since the presented measures are transparent and basic, they should encourage biobanks in defining their own data protection concept and be easily transferable to different legal requirements.

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http://dx.doi.org/10.1089/bio.2018.0112DOI Listing

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