The Signatories of the declaration of cooperation “Towards access to at least 1 million sequenced genomes in the EU by 2022” are setting up a collaboration mechanism with the potential to improve disease prevention, allow for more personalised treatments and provide a sufficient scale for new clinically impactful research.

 Declaration for delivering cross-border access to genomic database: 1 million genomes accessible in the EU by 2022, linking access to existing and future genomic databases, providing a sufficient scale for new associations in research

Since its launch on Digital Day 2018, the “1+ Million Genomes” initiative has grown into a real cooperation mechanism involving all 24 countries. These countries meet on a regular basis in order to make sure that the aim of the declaration - having at least 1 million sequenced genomes available in the EU by 2022 - is achieved.

What will be the benefit for EU citizens?

Genomics has the potential to revolutionise healthcare in many ways. It could lead to the development of more targeted personalised medicines, therapies and interventions. It could also enable better diagnostics, boost prevention and make more efficient use of scarce resources. From cancer, to rear diseases, brain related diseases or prevention – Genomics can greatly improve various health conditions of EU citizens.

Equally important, Genomics has also the potential to improve the effectiveness, accessibility, sustainability and resilience of health systems in the European Union.

What are the Signatories trying to achieve?

The Signatory countries have various objectives. Among these, are:

  • Ensuring that appropriate technical infrastructure, allowing for secure, federated access to genomic data, is available all over the EU;
  • Making sure that ethical and legal implications of genomics, such as protection of personal data, security of stored data, ethical use of data  and clear data ownership rules, are clear and taken into account;
  • Ensuring that the general public and policy makers in Member States and signatory countries are well informed about Genomics, in order to ensure its uptake by healthcare systems and integration into personalised healthcare.

The European Union as a global player in Genomics

We live in an era where Genomics becomes increasingly important globally. The European Union’s genomic collaboration and research have to be citizens-focused and patient-friendly, making sure that the highest standards are applied for the usage, access and storage of genomic data.

Collaboration is the key for success

Reaching at least 1 million sequenced genomes in the EU by 2022 is a collaborative task, which will involve a variety of stakeholders – health professionals, specialists, researchers, decision-makers, patient organisations and others.

Implementation of the Declaration

The signatory Member States had their kick-off meeting on 21 September 2018 in Brussels. Since then, they meet regularly and collaborate all together and in 11 specialised working groups to make sure that by 2022 there will be a research cohort of at least 1 million sequenced genomes accessible in the EU.

In late 2020, the Commission created a special expert group (1+MG Group) with a view to formalising and facilitating the cooperation and coordination at the level of national representatives of the signatory countries. The Group is co-chaired by the Commission and a Member State representative.

A clear strategy forward: the ‘1+MG Roadmap 2020-2022’

To meet the target of having over one million genomes sequenced by the end of 2022, in February 2020, the signatories of the 1+ Million Genomes initiative adopted the ‘1+MG Roadmap 2020-2022’. The Roadmap (.pdf) has been established to provide a clear perspective for tangible outcomes over the course of the next three years and can be easily discovered in the new brochure.

The Horizon 2020 project “Beyond 1 Million Genomes” supports and coordinates on the operational level the implementation of the Roadmap by leading up to an agreement on the infrastructure set-up, legal and technical guidance, and data standards and best practices to enable data access. It will look also ‘beyond’ the initiative towards the development of a sustainable data sharing infrastructure to provide the means necessary for clinicians to pursue personalised medicine and benefit their patients, scientists to better understand diseases, and innovators contribute to and boost the European economy.

‘Genome of Europe’

The Genome of Europe (.pdf) is a multi-country coordinated action designed within the 1+MG initiative with the support of B1MG. It brings together European countries to build a high-quality European network of national genomic reference cohorts, selected to be representative for the European population. 

All countries involved generate via Whole Genome Sequencing a national genomic reference dataset based on their own national population cohort, all according to jointly established ‘1+MG-proof’ guidelines. Each country’s dataset will in its own right form a unique national reference collection that will benefit national personalised healthcare and prevention strategies. Collectively, crosslinked via the 1+MG initiative, the national collections will establish a world-class European reference data resource (The Genome of Europe) for research and innovation of healthcare.

The Genome of Europe constitutes an operational layer of the Multi-Country Project ‘European Reference Genome’ (.pdf).

Background

The Declaration on genomics cooperation: ‘Towards access to at least 1 million sequenced genomes in the EU by 2022’, was launched on Digital Day 2018 and is signed already by 22 Member States (Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, The Netherlands, Portugal, Slovenia, Spain and Sweden), the UK and Norway. The initiative is also open to countries of the European Economic Area and the European Free Trade Association. It is part of the EU’s agenda for the Digital Transformation of Health and Care, as set out in its recently adopted Communication.

This cooperation mechanism is supported and facilitated by the European Commission, which works closely with the Member States in order to ensure that in 2022 there will be at least a cohort of 1 million sequenced genomes accessible for research and personalised medicine in the EU.

map of the signatory countries