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
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
523-530Subventions
Organisme : Bundesministerium für Bildung und Forschung
ID : 01EY1103
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