EU collaboration project to promote access to genomic data
The success of the European ‘1+ Million Genomes’ Initiative relies on wide-ranging collaboration. Among the objectives of the EU project is to ensure secure, cross-border access to genomic data in ways that safeguard privacy protection and benefit the people.
The project was launched in April 2018 when 13 EU Member States signed the declaration “Towards access to at least 1 million sequenced genomes in the EU by 2022”. EU-wide cooperation is essential for investigating diseases and for utilising genetic data in healthcare settings.
The collaboration project aims to improve the EU’s competitiveness in the rapidly developing field of personalised medicine, where the general objective is to provide predictive, preventive and participatory healthcare.
The ‘1+ Million Genomes’ Initiative is part of the wider Digital Single Market package. By October 2020, 23 European countries have signed the declaration. The European Commission supports the project activities of the Member States.
What will be the benefit for EU citizens?
The knowledge and new research methods generated in genomics will create opportunities for understanding human health, for investigating why diseases develop and for finding ways to prevent them and target treatment. Genomic data, or information concerning individuals’ whole genetic makeup, is being used in healthcare to an accelerating extent. In future, health promotion and the treatment of diseases will be increasingly planned using information from individuals’ genomic data.
Around 30 to 40 million Europeans have a rare disease that has a genetic origin in more than 80 per cent of cases. Genetic changes in a tumour determine how cancer develops, and identifying these changes through precision diagnostics makes it possible to treat cancer patients with precision therapies.
Genomic data helps make better decisions in healthcare, investigate the causes of diseases, understand the risk of disease, create more precise diagnostics and choose or customise the therapies that work best.
Cooperation the key to success
The EU needs secure, cross-border access to genomic data
- to promote understanding of genetic associations that cause complex diseases or expose people to them,
- to develop and improve ways to identify cancer at an early stage,
- to identify new target genes for developing new target medicines faster,
- to make disease prevention more effective by improving the accuracy of screening and by reducing its costs,
- to improve treatment outcomes for patients and ensure the sustainability of healthcare and treatments across the EU
- to promote investment, economic growth and jobs.
Coordination group to advance national preparation
In Finland, the ‘1+ Million Genomes’ Initiative will be promoted by a coordination group at the Ministry of Social Affairs and Health. The group will have two roles: it will advise the Ministry when it prepares its policies and it will ensure the flow of information among Finnish operators from various sectors taking part in the project. The members of the coordination group are the Finnish members in the various EU working parties operating under the EU project and Ministry officials supporting the group’s work.
For the purpose of the project, the Ministry will also appoint a national mirror group. The mirror group’s main tasks will be to draft Finland’s strategic guidelines, prepare ways to utilise the project in Finland and to stay in contact with national and EU projects on genomic data. The members of the mirror group will include representatives of key administrative branches, interest groups and operators in the field.
Tuula Helander, Deputy Director General
Ministry of Social Affairs and Health, Turvallisuus ja terveys -osasto / TUTO, Bioteknologia ja lääkkeet -yksikkö / BILA
+358 295 163 480, [email protected]
Tia-Maria Kirkonpelto, Specialist
Ministry of Social Affairs and Health, Department for Safety, Security and Health /TUTO, Biotechnology and Medicines Unit / BILA
+358 295 163 264, [email protected]