Country representatives vote on interim and long-term sustainability
The legal framework for both interim and long-term sustainability of the 1+MG infrastructure has been defined, following a voting by representatives of countries participating in the GDI project.
The infrastructure is being deployed by the GDI project to support the 1+MG initiative’s ambition of accelerating the rollout of genomic medicine in Europe to enable personalised prevention, diagnosis and treatment. A Genome European Digital Infrastructure Consortium (EDIC) will serve as the legal entity for the infrastructure, and it is expected to be established between late 2025 and early 2026.
1+MG member states participating in the GDI project were asked to choose between centralised or decentralised model for controllership of data disclosure, both in the long-term and during the interim period before the long-term solution is implemented.
In both cases, member states expressed a preference for decentralised controllership. In the long term, member states indicated preference for an EDIC with controllership for data disclosure at national level, exercised through the European Health Data Space (EHDS). In the interim, and to allow deployment of the infrastructure with Genome of Europe (GoE) data before the end of the GDI project, controllership at national level using dynamic consent was the preferred option, with data controllers being either national data holders or submitters to the Federated European Genome Phenome Archive (FEGA). FEGA is a parallel sensitive data infrastructure, already in use by some 1+MG member states.
With a clear legal pathway now agreed, the infrastructure can move ahead with a shared understanding across member states, ensuring continuity with long-term operations under the Genome EDIC.
Find out more
Posted: 30 July 2025