Since its launch on Digital Day 2018, the “1+ Million Genomes” initiative has grown into a real cooperation mechanism involving all 20 signatory Member States and Norway. 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 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.
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 20 Member States (Austria, Bulgaria, Croatia, Cyprus, Czech Republic, Estonia, Finland, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, The Netherlands, Portugal, Slovenia, Spain, Sweden and the UK) and, since 14 June 2019, by 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.
- EU countries will cooperate in linking genomic databases across borders
- Bulgaria signs the declaration on linking genomic databases across borders
- Greece and Austria sign the Genomic Declaration
- Latvia joins the 1 Million Genomes Initiative
- Croatia signs the Genomic Declaration
- Hungary has signed the 1 Million Genomes Declaration
- Norway is the 21st country to sign the 1+ Million Genomes Declaration