The '1+ Million Genomes' (1+MG) initiative brings together 22 EU countries, the UK and Norway with a goal to have at least 1 million sequenced genomes accessible in the EU by 2022.
What is 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 rare diseases to neurodiseases and prevention, genomics can greatly improve health conditions of EU citizens.
Equally important, genomics has 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 is available across the EU, allowing for secure, federated access to genomic data;
- making sure that ethical and legal implications of genomics 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 EU 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 citizen-focused and patient-friendly. It should make sure that the highest standards are applied for the usage, access and storage of genomic data.
Implementation of the Declaration
Reaching at least 1 million sequenced genomes in the EU by 2022 is a collaborative task, which will involve a variety of stakeholders. These include health professionals, specialists, researchers, decision-makers, patient organisations and more.
The signatory countries had their kick-off meeting on 21 September 2018 in Brussels. Since then, they meet regularly with each other 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 an EU country representative.
The 1+MG Roadmap 2020-2022
To meet the target of having over 1 million genomes sequenced by the end of 2022, the signatories of the 1+ Million Genomes initiative adopted the '1+MG Roadmap 2020-2022' (.pdf). The Roadmap provides a clear perspective for tangible outcomes over the course of the next three years.
The Horizon 2020 project 'Beyond 1 Million Genomes' (B1MG) 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 beyond the initiative towards the development of a sustainable data sharing infrastructure. This will support clinicians to pursue personalised medicine, benefit patients, help scientists to form a better understanding of diseases, and innovators to contribute to and boost the European economy.
Genome of Europe
The Genome of Europe is a multi-country project designed and coordinated with the support of B1MG. It brings together European countries to build a high-quality European network of national genomic reference cohorts, representative of 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 form a unique national reference collection in its own right. The collection 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 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 by 22 EU countries, the UK and Norway. The initiative is 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.
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.