Providing access to genomic data to improve research, policy making and healthcare across Europe
The Genomic Data Infrastructure (GDI) project is enabling access to genomic and related phenotypic and clinical data across Europe. It is doing this by establishing a federated, sustainable and secure infrastructure to access the data. It builds on the outputs of the Beyond 1 Million Genomes (B1MG) project and is realising the ambition of the 1+Million Genomes (1+MG) initiative.
The data
The project involves human genomic and related phenotypic and clinical data held in databases across Europe. The project will focus on the Genome of Europe (a network of national reference genome collections), and cancer and infectious disease use cases. “Real” synthetic data will be used for validation before data are available through the infrastructure.
Who will access it?
Controlled access will be given to approved clinicians, scientists in the public and private sector and healthcare policy makers. Non-sensitive and aggregated data will be openly discoverable through the European Genome Dashboard and a federated query system. This system will support genotypic and phenotypic queries in natural language.
What are the benefits?
Insights from the data will support improved clinical diagnostics, treatments and predictive medicine for European citizens. The project will also lead to better public health measures to benefit citizens, healthcare systems and the economy.
Who is running it?
The GDI project brings together experts in life science, medicine, computer science, ethics and law from 54 project partners across 20 countries and two infrastructure organisations. They will ensure access to datasets is secure, ethical and compliant with European and national law.
Realising a vision for European healthcare
The vision
In 2018, the 1+Million Genomes (1+MG) initiative was launched to create a European data infrastructure for genomic data. This would implement common national rules enabling federated data access. Twenty six European countries have signed the declaration. The goal of the initiative is to enable secure access to genomic and the corresponding clinical data across Europe for better research, personalised healthcare and health policy making.
Designing and testing
In 2020, the Beyond 1 Million Genomes (B1MG) project began. The project is developing guidelines on how to implement the 1+MG initiative. Amongst its outputs are blueprints and recommendations for building a federated network of genomic data (the 1+MG Framework). It is also producing tools to help countries self assess their readiness to implement genomics into healthcare systems.
Scaling up and sustaining
In 2022, the GDI project began. This €40M project is building on the preparatory work of 1+MG working groups, the B1MG project and investments of EU countries. It is creating and deploying the technical capacity for accessing genomic data. In this way, it will implement the vision of the 1+MG initiative.
Project overview
Goals
- To support the 1+Million Genomes (1+MG) initiative to enable secure access to high-quality genomics and the corresponding clinical data across Europe for better research, personalised healthcare and health policymaking.
- To build on the Beyond 1 Million Genomes (B1MG) project outputs and establish a federated, sustainable and secure data infrastructure based on open community standards to access genomic and related phenotypic and clinical data across Europe,
See the About page and objectives and background.
Coordinator
Serena Scollen (Head of Human Genomics and Translational Data, ELIXIR)
See How the project is organised and Contributors.
Participants
56 institutes from 20 European countries and 2 international organisations.
See Participants.
Duration
Four years (November 2022 - October 2026)
Funding
€40 million - jointly funded by the European Commission under the Digital Europe Programme, and through co-funding from participating Member States.