Europe Biobank Week 2016
Update on Ethical, Legal, and Societal Issues
At the Europe Biobank Week in Vienna, members of all European ethics committees (EC) had an initial discussion on the conditions of mutually recognizing European EC votes for medical research projects. Existing solutions, pitfalls and challenges at the European level were highlighted, and models of how to achieve mutual EC recognition were discussed. This dialogue is to be continued next year in Stockholm in order to further develop the initial agreements made at the Vienna meeting.
During the congress, a number of important ELSI themes were addressed, including new concepts and tools for public engagement (participation of patients and the public in biobanking) (B1, B6) and strategies for biobanks' public outreach (B7). Existing solutions for particular ELSI challenges were debated in session B2; A.M. Tassé (Montréal, Canada) reported on the difficulties of gathering biosamples from various studies for medical crossover projects, because study-specific consent forms do not always allow a use of the samples beyond the indicated purpose. To solve this issue, R. Jahns (Würzburg, Germany) proposed the German broad consent template, which would allow for cross-border exchange of biomaterials and related data. A. Cambon-Thomsen (Toulouse, France) presented the Bio-Resource Impact Factor (BRIF) initiative for facilitating the sharing of bioresources through incentives and tools, which still awaits broad implementation in order to trace bioresources and standardize the citation of bioresources in the academic literature according to the CoBRA guideline (BMC Med. 2015,13:266). Next, H. Langhof (Hannover, Germany) reported on the results of a survey on access policies in biobank research and their public availability. Internationally, only 14% of biobanks make their access policies publicly available. Lastly, P. Manders (Nijmegen, NL) proposed a workflow for dealing with unsolicited findings in (genetic) research, differing between "single candidate gene testing" and "whole exome analysis," the latter generally involving an "unsolicited findings committee." From an ethical and legal point of view, the presentation given by I. Schlünder and M. Sariyar (TMF/GBN, C2) was of utmost interest to biobanks involved in genetic research; according to their reflections and in terms of current practice, whole genomic data cannot be anonymized.
The upcoming EU data protection regulation (GDPR) was another focus of the Europe Biobank Week. In the research context, no major changes are expected with regard to current data privacy procedures, except for an increased involvement of (and optional feedback to) donors.
Prof. Dr. Roland Jahns
Interdisciplinary Bank of Biomaterials and Data Würzburg (ibdw)