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13 countries to share 1 million genomes for research

16 April 2018
Appeared in BioNews 945

Thirteen European countries have pledged to share one million genomes for research purposes by 2022.

These countries – including the UK, Sweden, Finland, Estonia and Spain – signed a declaration during the European Union's Digital Day 2018 conference that commits them to work together and ensure secure and authorised cross-border access to genomic and other health data.

The initiative is in agreement with the EU's Digital Single Market mid-term review priorities, which includes 'supporting the establishment of a secure health data infrastructure at EU level, to advance research and personalised medicine'.

Vytenis Andriukaitis, the EU's Commissioner for Health and Food Safety, said: 'This initiative can boost the development of public health for the benefit of EU citizens…I congratulate member states signing this declaration today and call upon other member states to join this great initiative and to make the EU a beacon for global health research.'

The countries involved will seek to leverage investments already made at national and EU level, especially in sequencing, biobanking and data infrastructure. The idea of bringing these resources together is to create a wider clinical impact, allowing researchers to better understand, prevent and develop treatments for rare diseases. Additionally, it is intended to speed up data-driven healthcare through 'a concerted effort to overcome data silos, lack of interoperability and fragmentation of initiatives across the EU'.

The declaration has also stressed the need for robust personal data-protection mechanisms that safeguard the privacy of individual data donors. It states that such cross-border data flows 'must be implemented in a lawful, secure, appropriate and specific way'.

However, notable research-intensive EU nations such as France and Germany have not signed up to the agreement so far. On the other hand, Brexit-bound UK has signed, despite getting ready to leave the EU next year. The UK's 100,000 Genomes Project is the world's largest national sequencing project.

In the same week as the declaration was announced, the UK Biobank said it would be sequencing 50,000 whole genomes by 2019, taking its first step towards sequencing 500,000 full genomes – a target laid out in the UK government's life-sciences industrial strategy.

'This development is transforming in many ways. It massively extends the sorts of questions that scientists can ask and the speed at which they will get results,' UK Biobank's principal investigator, Professor Sir Rory Collins, said in a statement.

Professor Sir John Bell at the University of Oxford, the architect of the life-sciences strategy, said: 'We hope in the coming months we will be able to consider thoroughly the range of options open for the main programme, including the use of new technologies to enhance the data set.'

He added: 'This programme should provide a new global standard for human genome sequencing and will greatly improve our ability to define and treat disease.'

SOURCES & REFERENCES
Boffins score gene bonanza: EU countries pledge to share one million genomes by 2022
The Register |  11 April 2018
Digital Day 2018: EU countries to commit to doing more together on the digital front
European Commission |  9 April 2018
UK Biobank kicks off whole-genome sequencing
Research Fortnight |  6 April 2018
Whole genome sequencing will ‘transform the research landscape for a wide range of diseases’
Wellcome Sanger Institute |  6 April 2018
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