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

Biobank Data management Ethics Governance Quality assurance

Journal

Journal of community genetics
ISSN: 1868-310X
Titre abrégé: J Community Genet
Pays: Germany
ID NLM: 101551501

Informations de publication

Date de publication:
Oct 2019
Historique:
received: 22 10 2018
accepted: 13 03 2019
pubmed: 31 3 2019
medline: 31 3 2019
entrez: 31 3 2019
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 30927239
doi: 10.1007/s12687-019-00417-8
pii: 10.1007/s12687-019-00417-8
pmc: PMC6754520
doi:

Types de publication

Journal Article

Langues

eng

Pagination

523-530

Subventions

Organisme : Bundesministerium für Bildung und Forschung
ID : 01EY1103

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Auteurs

Wolfgang Lieb (W)

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.

Gunnar Jacobs (G)

Institute of Epidemiology Kiel University and PopGen Biobank, University Hospital Schleswig-Holstein UKSH, Campus Kiel Hs. 1, Niemannsweg 11, 24105, Kiel, Germany.

Andreas Wolf (A)

Institute of Medical Informatics and Statistics, Kiel University, Kiel, Germany.

Gesine Richter (G)

Institute of Epidemiology Kiel University and PopGen Biobank, University Hospital Schleswig-Holstein UKSH, Campus Kiel Hs. 1, Niemannsweg 11, 24105, Kiel, Germany.
Division of Biomedical Ethics, Institute of Experimental Medicine, Kiel University, Kiel, Germany.

Karoline I Gaede (KI)

BioMaterialBank Nord, Department of Medicine, Leibniz Lung Center for Medicine and Biosciences, Borstel, Germany.

Jeanette Schwarz (J)

Institute of Clinical Chemistry, Kiel University, Kiel, Germany.
Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.

Norbert Arnold (N)

Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.
Department of Gynecology and Obstetrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Ruwen Böhm (R)

Institute of Experimental and Clinical Pharmacology, Kiel University, Kiel, Germany.

Alena Buyx (A)

Division of Biomedical Ethics, Institute of Experimental Medicine, Kiel University, Kiel, Germany.

Ingolf Cascorbi (I)

Institute of Experimental and Clinical Pharmacology, Kiel University, Kiel, Germany.

Andre Franke (A)

Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.

Christine Glinicke (C)

Ethics Committee of the Medical Faculty, University of Kiel, Kiel, Germany.

Janka Held-Feindt (J)

Department of Neurosurgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Ralf Junker (R)

Institute of Clinical Chemistry, Kiel University, Kiel, Germany.

Holger Kalthoff (H)

Institute for Experimental Cancer Research, Kiel University, Kiel, Germany.

Hans-Heiner Kramer (HH)

Department for Congenital Heart Disease and Pediatric Cardiology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Frank Leypoldt (F)

Department of Neurology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Nicolai Maass (N)

Department of Gynecology and Obstetrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Walter Maetzler (W)

Department of Neurology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Sandra May (S)

Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.

H Maximilian Mehdorn (HM)

Ethics Committee of the Medical Faculty, University of Kiel, Kiel, Germany.
Department of Neurosurgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Christoph Röcken (C)

Institute of Pathology, Kiel University, Kiel, Germany.

Clemens Schafmayer (C)

Department of General and Thoracic Surgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Martin Schrappe (M)

Department of Pediatrics, University Hospital Schleswig-Holstein UKSH, Campus Kiel, Kiel, Germany.

Stefan Schreiber (S)

Institute of Clinical Molecular Biology, Kiel University, Kiel, Germany.
Department of Internal Medicine I, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Susanne Sebens (S)

Institute for Experimental Cancer Research, Kiel University, Kiel, Germany.

Ulrich Stephani (U)

Department of Neuropediatrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Michael Synowitz (M)

Department of Neurosurgery, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Jörg Weimer (J)

Department of Gynecology and Obstetrics, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Germany.

Peter Zabel (P)

Department of Pneumology, Leibniz Lung Center for Medicine and Biosciences, Borstel, Germany.

Ute Nöthlings (U)

Department of Nutrition and Food Sciences, University of Bonn, Bonn, Germany.

Christian Röder (C)

Institute of Epidemiology Kiel University and PopGen Biobank, University Hospital Schleswig-Holstein UKSH, Campus Kiel Hs. 1, Niemannsweg 11, 24105, Kiel, Germany.
Institute for Experimental Cancer Research, Kiel University, Kiel, Germany.

Michael Krawczak (M)

Institute of Medical Informatics and Statistics, Kiel University, Kiel, Germany.

Classifications MeSH