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J Community Genet. 2019 Mar 29. doi: 10.1007/s12687-019-00417-8. [Epub ahead of print]

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

Author information

1
Institute of Epidemiology Kiel University and PopGen Biobank, University Hospital Schleswig-Holstein UKSH, Campus Kiel Hs. 1, Niemannsweg 11, 24105, Kiel, Germany. wolfgang.lieb@epi.uni-kiel.de.
2
Institute of Epidemiology Kiel University and PopGen Biobank, University Hospital Schleswig-Holstein UKSH, Campus Kiel Hs. 1, Niemannsweg 11, 24105, Kiel, Germany.
3
Institute of Medical Informatics and Statistics, Kiel University, Kiel, Germany.
4
Division of Biomedical Ethics, Institute of Experimental Medicine, Kiel University, Kiel, Germany.
5
BioMaterialBank Nord, Department of Medicine, Leibniz Lung Center for Medicine and Biosciences, Borstel, Germany.
6
Institute of Clinical Chemistry, Kiel University, Kiel, Germany.
7
Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.
8
Department of Gynecology and Obstetrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
9
Institute of Experimental and Clinical Pharmacology, Kiel University, Kiel, Germany.
10
Ethics Committee of the Medical Faculty, University of Kiel, Kiel, Germany.
11
Department of Neurosurgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
12
Institute for Experimental Cancer Research, Kiel University, Kiel, Germany.
13
Department for Congenital Heart Disease and Pediatric Cardiology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
14
Department of Neurology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
15
Institute of Pathology, Kiel University, Kiel, Germany.
16
Department of General and Thoracic Surgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
17
Department of Pediatrics, University Hospital Schleswig-Holstein UKSH, Campus Kiel, Kiel, Germany.
18
Department of Internal Medicine I, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
19
Department of Neuropediatrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.
20
Department of Pneumology, Leibniz Lung Center for Medicine and Biosciences, Borstel, Germany.
21
Department of Nutrition and Food Sciences, University of Bonn, Bonn, Germany.

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.

KEYWORDS:

Biobank; Data management; Ethics; Governance; Quality assurance

PMID:
30927239
DOI:
10.1007/s12687-019-00417-8

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