Value-creation in a broader context is an important principle for the biobanks in Norway. Norwegian biobanks follow a value-based principle in contracting that is dependent on the type of collaboration in the specific project. Our primary interest is to attract the best and high-value research collaborations projects that will give us for instance knowledge transfer, publications, network and returned data points from wet-lab analyses.
We hope you would like to collaborate with us. Below are our guidelines on collaborations.
Guidelines for collaborations
Access to data
Norwegian biobank samples and associated phenotypic data can only be accessed in the context of an industry research project. Dataset and biobank samples can be exported abroad when a collaborative research project is up and running, regulated trough data and material transfer agreements.
Biobank Norway is a national research infrastructure and not a legal entity. The contracting process for setting up an industry research project is handled directly by the institution where the project leader is located. The institution's internal legal service and/or their technology transfer office (TTO) may assist in this process.
Norwegian project leader
The collaborative research project needs to be anchored in Norway with a Norwegian project leader and a Norwegian institution as accountable for the research. It is the project leader’s responsibility to seek the necessary approvals and being responsible for the conduct of the research in compliance with Norwegian regulations and ethical standards. Besides that, the academic and industry researchers are free to divide the tasks within the project as is best suited for the research in question.
Diverse collaboration models
Norwegian biobank and associated academic institutions can operate different models for industry research collaborations. Plain contract research, true partnering projects when synergies in research interest is high as well as joint participation in public-private consortia are all relevant.
Return of results
A basic principle for all Norwegian human biobanks is that research groups performing additional phenotypic characterisation on subjects, or perform new analyses on biobank samples, must return those data points to the biobank so that new data enrich the biobank over time.
All projects involving biobank samples or health data must be approved by one of the Regional Committees for Medical Health Research Ethics (REC). In the ethical approval process, a detailed overview of the planned research project is required, including details regarding the data collection, how the data will be handled and published, the burden and risk for the research participants and how the expected research findings are of benefit to the wider society. Following the REC approval, the submission to the different external registries required in a project can take place.
In addition to ethical approval of the overall project, approval by the individual biobanks, health registries, and databases that are involved in a given project is also required. Access to each institution is regulated and controlled by data access committees (DAC) or similar regulatory bodies. Furthermore, where register or database linkage is necessary, clear agreements need to be in place to guarantee data integrity during linkage on the one hand, and data security on the other, so that no information is revealed that can lead to re-identification of individual participants or patients.
The approval and data linkage process take on average 4-6 months from the REC submission until the linked and de-identified data file can be transmitted to the research group. For complex projects that involves several external registries, the approval and data retrieval process can take longer.
There are some fixed costs involved related to sample and phenotypic data preparation. Most biobank operates with a fixed access fee around 3,000-5,000 USD per project. Most external health registries charge a fee for the work involved in extracting and preparing the dataset, usually 1,500-3,000 USD per registry. Most biobanks have price list for picking, extracting and sending biobank samples for a project.