Biobanks are scientific collections of samples and data. They combine samples of human body substances (e.g., tissue, blood, DNA) with medical or genetic data, information on health status, family background or life style, data on type and course of disease or socio-demographic information, statistics, and registries. Biobanks range from smaller collections of material to multi-sectional institutions and large-scale international projects.
Due to their importance in research on widespread diseases, especially those of a global scope, and due to the significance of the interaction between genetics and the environment, biobanks were listed in the 2009 issue of TIME Magazine as one of ten world-changing ideas. Large biobanks in particular have been raising basic questions that have drawn the attention of policymakers, academics, corporate entrepreneurs, and consulting commissions. In 2004, the National Ethics Council in Germany made recommendations on issues associated with biobanks. The German Ethics Council made further recommendations in 2010. Between 2010 and 2012, initiatives for draft biobank legislation on a national level were unsuccessful. Debates focused on the protection of persons donating body material, requirements for informed consent, protection from genetic discrimination and stigmatization, the necessity of institutionalizing the confidentiality of biobanks (“biobank secrecy”), (privileged) access of donors to research results (known as "benefit sharing"), access of researchers to established biobanks, and issues concerning the commercialization of body material and records.
Marion Albers, 22.07.2014 / Marion.Albers@uni-hamburg.de