Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network.

Authors:
Wolfgang Lieb, Gunnar Jacobs, Andreas Wolf, Gesine Richter, Karoline I Gaede, Jeanette Schwarz, Norbert Arnold, Ruwen Böhm, Alena Buyx, Ingolf Cascorbi, Andre Franke, Christine Glinicke, Janka Held-Feindt, Ralf Junker, Holger Kalthoff, Hans-Heiner Kramer, Frank Leypoldt, Nicolai Maass, Walter Maetzler, Sandra May, H Maximilian Mehdorn, Christoph Röcken, Clemens Schafmayer, Martin Schrappe, Stefan Schreiber, Susanne Sebens, Ulrich Stephani, Michael Synowitz, Jörg Weimer, Peter Zabel, Ute Nöthlings, Christian Röder, Michael Krawczak
Year of publication:
2019
Volume:
-
Issue:
-
Issn:
1868-310X
Journal title abbreviated:
J Community Genet
Journal title long:
Journal of community genetics
Abstract:
The significance of human biorepositories for modern medical research, particularly for comprehensive population-based genetic analyses, is constantly growing. While large and centralized institutions are usually considered best suited to meet the increasing demand for high-quality "biobanks," most medical research institutions still host rather heterogeneous and fragmented biobanking activities, undertaken by clinical departments with oftentimes rather different scientific scope. Undoubtedly, most clinicians and medical researchers would appreciate infrastructural support in terms of the storage and handling of their biosamples, but they are also likely to expect access to their samples avoiding extensive formal requirements. We report on the establishment of the PopGen 2.0 Network (P2N), an overarching alliance of initially seven biobanks from Northern Germany which adopted a joint but lean governance structure and use-and-access policy for their samples and data. In addition, the members of P2N have pursued an intense collaboration on ethical, legal and social issues and maintain a common IT infrastructure. The implementation of P2N has substantially improved the prospects of biobank-based research at the participating institutions. The network may thus serve as a role model for similar initiatives geared at linking pre-existing biorepositories for the benefit of research quality, efficiency, and transparency.