The German Ethics Council revisits the subject of biobanks

In her introductory paper, Regine Kollek, a member of the German Ethics Council and Professor of Evaluation of the Consequences of Modern Biotechnology in Medicine at the University of Hamburg, argued that, since the publication of the National Ethics Council's Opinion Biobanks for Research in 2004, significant changes had taken place in the material and structural evolution of biobanks and that these called for an updated ethical and legal assessment.

Biobanks were an important research resource, especially for elucidating the causes and mechanisms of many widespread multifactorial diseases and their treatment. They were therefore indispensable to the development of a medicine tailored to individual needs.

A number of new trends were emerging in recent biobank research, involving quantitative and qualitative expansion, links between establishments and internationalization, privatization and commercialization, as well as standardization, relaxation of restrictions as to purpose, and politicization.

These presented a whole range of ethical challenges. Data protection was confronted with new demands by the need for science to record as much data as possible and to utilize it without limitation of time, and because data accruing from genome research could not readily be anonymized on account of the individual gene patterns which it included. Additional problems could arise from the fact that agencies of the State could not be refused access to stored data and from the tendency for the level of information available to donors and their control over data and samples to be reduced by the complexity of the links between biobanks.

Professor Kollek recommended that the Ethics Council should take a fresh look at the subject, a view that was seconded by a number of members in the ensuing discussion. The German Ethics Council will decide at its December meeting whether, and if so how, to pursue its deliberations on biobanks.