Organisational onboarding
Organisational onboarding means getting an organisation ready to use FEGA Sweden. It is for organisations that want to enable submission of sensitive human research data for which they are responsible.
During organisational onboarding, FEGA Sweden and the organisation agree who does what and set up the legal and practical details needed before submissions can move forward. This page is intended for universities, biobanks, and other research organisations.
Why organisations onboard with FEGA Sweden
Organisational onboarding has two related purposes. It enables the organisation to use FEGA Sweden for data submission and sharing with approved researchers, and it gives the organisation and FEGA Sweden a shared way of working before submissions start.
What FEGA Sweden enables
Once onboarded, the organisation can:
- Submit sensitive human research data to FEGA Sweden
- Use secure infrastructure for storing and distributing sensitive data
- Make public descriptions of data findable through the European Genome-phenome Archive (EGA) and Researchdata.se
- Share data with approved researchers while retaining control over access conditions and decisions
How organisational onboarding helps
The organisational onboarding process helps by:
- Agreeing what the service will be used for and preparing for a first submission, including review of public metadata
- Agreeing roles, contacts, and division of responsibilities between the organisation and FEGA Sweden
- Clarifying responsibilities for each step in submissions and access requests
- Clarifying legal and GDPR arrangements, including a Data Processing Agreement (DPA) if needed
- Providing information for the organisation’s own legal, information security, or Data Protection Impact Assessment (DPIA) work; a DPIA is an assessment of privacy risks
- Guiding how approved access rules and Data Access Agreement (DAA) information should be entered in the relevant systems
Organisational onboarding steps
- Introductory meeting to discuss needs, data types, and timelines
- Agreement on roles, contacts, ways of working, and responsibilities for submissions and access requests
- Clarification of legal and GDPR arrangements, including any DPA or local review
- Agreement on how approved access rules and DAA information should be entered in the relevant systems
- A first submission carried out with guidance from the FEGA Sweden team
In practice, organisational onboarding often develops step by step. Some steps can happen at the same time, and the timeline depends on the organisation’s own decision-making, legal review, any DPIA work, and readiness for a first submission.
Organisations already onboarded
The following organisations are already onboarded:
- Lund University
- Uppsala University
- The Swedish Childhood Tumor Biobank (Barntumörbanken)
We are also working with additional organisations to complete organisational onboarding.
Legal and GDPR arrangements
A DPA is usually part of organisational onboarding, but it does not on its own mean that an organisation is fully onboarded for data submission. Some organisations have a DPA with Uppsala University but still need additional organisational onboarding work before a full submission can move forward.
See Legal and GDPR arrangements for DPA status, processing agreements, organisation review, and how access rules and DAA information are recorded.
Get started
If your organisation would like to start organisational onboarding, contact the FEGA Sweden team to discuss scope, responsibilities, and next steps.