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Europe Embarks on €40M Project to Build Genomic Data Sharing Infrastructure


NEW YORK — A newly funded European project aims to build the tools and networks to support the sharing of genomic and clinical data across borders to support research and personalized medicine.

In 2018, a number of European countries signed a declaration to make a million European genomes shareable by 2022 as part of the 1+ Million Genomes Initiative. While the time window for achieving that goal will soon pass, the new project, called Genomic Data Infrastructure (GDI), is seen as a step towards eventually realizing the ambitions of 1+MG.

GDI commenced this week with a budget of €40 million ($42 million) made available by the European Commission and participating countries. Unlike previous EU-backed projects around 1+MG, such as Beyond 1 Million Genomes, a three-year, €4 million effort to produce guidelines, tools, and recommendations for fulfilling the vision of 1+MG, the GDI project aims to lay down infrastructure by creating a cross-border, federated network of national genome collections.

Elixir, the European Life Sciences Infrastructure for Biological Information organization, is coordinating the GDI project. The project involves a consortium of partners from 20 European countries.

Andrew Smith, head of external relations for Elixir, said in an email that GDI "builds very much" on the work of the Beyond 1 Million Genomes project that kicked off in June 2020 and will wind up in May of next year.

"With GDI, there is now scope to begin to develop and deploy the infrastructure over the long term," said Smith. He noted that the scale of GDI is larger than B1MG and is the next phase of the overall 1+MG initiative, which will see infrastructure actually being deployed.

The GDI project is divided into three pillars. The first, long-term sustainability, will bring together country representatives to agree on a long-term governance model and a financial plan for infrastructure. The second will be infrastructure deployment and will see the resources become operational once agreements are signed. The third is use cases, where participants will work with clinicians and researchers to design tools that could be used to better share different kinds of data, such as cancer or infectious disease data.

Smith noted that there are "still many challenges" in accomplishing the aims of the GDI project, such as the need to develop interoperable infrastructure connecting research and healthcare data. "Non-technically, this project will also house discussions and lead to agreements on legal, business model, and sustainability topics, too," said Smith.

By 2026, the GDI project aims to have supported the scale-up and sustainability phase of the 1+MG, reached an agreement covering future governance of the initiative, established 15 national nodes for data management, and provided new resources developed through working with users in use cases.

"The roadmap is moving from design and testing into the scale-up and sustainability phase," said Serena Scollen, head of human genomics and translational data at Elixir, in an email. Scollen agreed with Smith that challenges in successfully implementing the GDI project abound, including co-funding through the member states, legal issues, and aligning genomic and healthcare data.