APS-1 Global Gene Expression

• HMB DUO:0000006 (version: 2021-02-23)health or medical or biomedical researchThis data use permission indicates that use is allowed for health/medical/biomedical purposes; does not include the study of population origins or ancestry.
• IRB DUO:0000021 (version: 2021-02-23)ethics approval requiredThis data use modifier indicates that the requestor must provide documentation of local IRB/ERB approval.
• PS DUO:0000027 (version: 2021-02-23)project specific restrictionThis data use modifier indicates that use is limited to use within an approved project.
• NCU DUO:0000046 (version: 2021-02-23)non-commercial use onlyThis data use modifier indicates that use of the data is limited to not-for-profit use.

University of Bergen Rare Monogenic Autoimmune Syndrome (APS-1) Data Access Policy

Data Access Policy for Genomic APS-1 datasets archived in Federated EGA Norway 1. Data Access Committee Each dataset submitted by University of Bergen (UiB) for archival and controlled access sharing in Federated EGA Norway, has a DAC appointed by UiB to govern controlled access to the dataset according to this Data Access Policy. Multiple datasets may be affiliated to a single DAC. UiB as an institution has the overall data controller responsibility, and will appoint a DAC based on proper internal procedures that ensures involvement of institutional functions such as Data Protection Officer, legal control, etc. 2. Data use conditions To advise any would-be requester on how the data can be used, Data Use Ontology codes (DUO) is associated to each dataset, providing the requester more insights into which terms for sharing and use of the data that applies, and that needs to be addressed as part of the communication with the DAC in a data access request. No access to any UiB dataset deposited in FEGA Norway can be granted to a requester before all applicable conditions and requirements for the use and management of the data have been agreed upon in a signed Data Access Agreement. 3. Data Access Agreement The Data Access Agreement (DAA) will include requirements specific for both the dataset and the management of the data in the hands of the requester applying for access, and will thus be an individual DAA for each case of granted access to a dataset. As a rule, a DAA for an UiB dataset will take the form of a Data Transfer Agreement, where the requester will commit to take on responsibilities and duties as a data controller. 4. Processing of requests for access The overall data access approval process at UiB can be summarised as follows: ● DAC for a UiB dataset is contacted by a potential data requester ● DAC continues communication with requester to understand the purpose of use, i.e. research setting the dataset is envisioned for by requester, to identify if data sharing is possible directly under current conditions for the dataset, or actions such as re-consenting is needed and desirable to accommodate the proposed research setting/data use. ● A Data Access Agreement is jointly formulated and agreed upon, with the DAC following internal UiB to include the Data Protection Officer and Division for research support. ● When a completed DAA has been signed between the parties, and archived at UiB, the DAC will instruct the FEGA Norway node to release the data to the requester,