Ireland and France have just joined 24 other EU countries, Norway, and the United Kingdom, in joining the EU’s “1+ million genomes” initiative to interconnect genomic databases, launched in 2018 to enable the sharing of health data to improve the understanding, prevention, and treatment of disease.
The 1+ Million Genomes (1+MG) initiative aims to enable secure access to genomics and related clinical data across Europe for better research, personalized healthcare, and health policymaking. It is part of the EU’s agenda for the digital transformation of health and care and is aligned with the goals of the European Health Data Space. With Ireland and France having just joined, Poland is the only EU member state not to be part of it.
Margrethe Vestager, executive vice president for a digital-friendly Europe, said:
“Expanding the database of valuable genetic information is critical to improving health care and well-being for all in the EU. And every new signatory to the More Than 1 Million Genomes initiative strengthens our position in health research.”
What can genomics bring to EU citizens?
Genomic databases contain collections of DNA data, which scientists and doctors can use to advance research into precision medicine and the detection and prevention of disease.
Genomics can lead to the development of more targeted drugs, therapies and personalized interventions. It can also lead to better diagnostics and more efficient use of scarce resources. From cancer to rare diseases to neuromaladies to prevention, genomics can make a real difference to the health of EU citizens.
Genomics also has the potential to improve the efficiency, accessibility, sustainability and resilience of health systems in the European Union.
The EU as a global player in genomics
Genomics is becoming increasingly important on a global scale. The 1+MG initiative must focus on citizens and patient welfare, ensuring that the highest standards are applied to the use, access and storage of genomic data. This project, one of the largest of its kind in the world, contributes primarily to the establishment of global standards in this field. The connection to the European Health Data Space will provide a new impetus for information that can ultimately benefit researchers, health professionals and all citizens.
What are the objectives of the signatory countries?
Since their kick-off meeting on September 21, 2018 in Brussels, the signatories have been meeting regularly in 12 specialized working groups where they are formulating guidelines for the implementation of the 1+MG initiative.
Their goals include:
- Ensure that appropriate technical infrastructures are available throughout the EU, allowing secure and federated access to genomic data;
- ensure that the ethical and legal implications of genomics are clear and taken into account
- Ensure that the general public and policy makers in the Member States and signatory countries are well informed about genomics, to ensure its adoption by health systems and its integration into personalized health care.
The 1+MG Roadmap
The signatories are implementing the 1+MG initiative according to a two-phase roadmap detailing their activities along four dimensions: governance, trust framework, infrastructure and data.
The first phase
In the first phase, the Horizon2020 Beyond a Million Genomes (B1MG) project supports and coordinates, at the operational level, the implementation of the roadmap by leading to agreement on the establishment of infrastructure, legal and technical guidance, data standards and requirements, and best practices for enabling data access.
The Second Phase
In the second phase, a deployment project funded under the Digital Europe program will establish a federated data infrastructure for genomic and clinical data across Europe that will enable distributed learning for various use cases, provide data access governance and a sustainable coordination mechanism, and help improve the interoperability of genomic and clinical data made available for access.
The project will also develop and implement a comprehensive communication strategy to inform citizens and ensure their trust. The rollout project is scheduled to launch in late 2022, marking the beginning of the expansion and sustainability phase of the initiative.
Genome of Europe
The Genome of Europe is a multi-country project designed and coordinated with support from B1MG, bringing together European countries to build a high-quality European network of national genomic reference cohorts, representative of the European population.
All countries involved produce a national genomic reference dataset based on their own national population cohort by whole genome sequencing, all according to jointly established “1+MG-proof” guidelines. Each country’s dataset will constitute a unique national reference collection in its own right. The collection will benefit from customized national health care and prevention strategies.
Collectively, cross-referenced through the 1+MG initiative, the national collections will establish a world-class European reference resource (The Genome of Europe) for healthcare research and innovation.