Biobank Norway 3 - a national biobank infrastructure

Biobank Norway (BN) was established in 2010 as an infrastructure for optimal use of biobank resources in a consortium with the equal partners: NTNU (coordinator), the Universities of Oslo, Bergen and Tromsø, National Institute of Public helath (NIPH), all four regional health authorities, Oslo University Hospital (OUS) and the Cancer Registry and biobank (Janus serum bank). BN represents Norway as a full member of BBMRI-ERIC, the official and legal European biobank research infrastructure, in the Management Committee and the Assembly of Members. Both clinical and population based research biobanks have markedly grown and flourished within this infrastructure with an increasing number of request from researchers for biobank services, samples and samples derived data. In BN3, we will prioritize the following areas: i) Establish a national forum for an integrated model for precision medicine, ii) Build hospital based (clinical) biobanks bridging regional boundaries, establish biobanking within community health care, develop models for collaboration between industrial partner and clinical biobanks and clarify legal and ethical challenges for hospital based research biobanks, iii) Continue our investment program through installation of a fully automated - 80 storage facility at OUS, iv) Develop data processing solutions and analysis tools for re-use of register data, v) To study and establish better principles for management and development of digital biobank collections to increase the value of digitized data vi) Improved biobank quality through evidenced base quality studies and accreditation and vii) a continuous focus on ethics issues, privacy matters and donor communication.

In Biobank Norway 3, we will establish an operating team, with a special focus on the establishment of a national forum for an integrated model for precision medicine, quality biobanking, HAP-integration and investments. The team functions will be established as a virtual organization. As an infrastructure, we have reached a point where sufficient resources and dedicated focus on driving the infrastructure on a daily basis is a clear necessity. Management will be lead by the project PI and the coordinator. In summary the other work streams are i) establish a national forum for an integrated model for precision medicine, ii) building hospital based (clinical) biobanks bridging regional boundaries, biobanking within community health care, develop models for collaboration between industrial partner and clinical biobanks, and clarify legal and ethical challenges for hospital based research biobanks, iii) continue our investment program through installation of a fully automated - 80 storage facility at OUS, iv) develop data processing solutions and analysis tools for re-use of register data in alignment with the “Helseanalyseplattformen” (HAP-integration), in collaboration with the Norwegian Directorate for e-Health, v) to study and establish better principles for management and development of digital biobank collections to increase the value of digitized data vi) improved biobank quality through evidenced base quality studies and accreditation and vii) a continuous focus on ethics issues. privacy matters and donor communication, establishing a digital two-way communication between study participants and researchers. Common Service ELSI will also focus on return of results, genetic re-call and informed consent under GDPR.