Million European Genome Alliance – bringing genetic medicine into the heart of European healthcare

In 2018, a number of EU member states, including the UK, came together to announce the Million European Genome Alliance with the aim of jointly committing to sequence a million genomes by 2022.

The EU countries involved have reached an agreement to collaborate on the secure and authorised access to national and regional banks of genetic data and other data relevant for health that will help achieve their shared ambitions in genomic medicine faster and more effectively. The European Commission supported this initiative in its Communication on digital transformation of health and care in April 2018.

Why this collective focus on genomic medicine? What are the benefits for European citizens and health systems?

UK plans to sequence five million genomes by 2023-2024

The sequencing of human genomes is destined to shape the future of healthcare as we know it.

The idea is to make sure that health systems can offer a better predictive, preventive and personalised health and care service for their citizens. The aim is to start with certain cancers and rare genetic disorders, where diagnosis can be tricky and the response to “average” treatment can vary a lot from person to person.

To implement this challenge in the UK, the government’s new National Genomic Strategy was published late February 2019 to offer genomic sequencing more routinely to people with certain rare cancers and children with rare genetic disorders.

Health and social care secretary Matt Hancock’s ambition is to sequence five million genomes in the UK by 2023-2024, going well beyond the European collective target, and making the UK a key partner for this collective effort.

His new National Genomic Strategy builds on the 100,000 Genome Project implemented by Genomics England, which has helped make the UK an international genome sequencing success story. While the first genome sequencing took 13 years to complete and cost just short of £1bn, sequencing can now be completed on the National Health Service (NHS) in two days for under £1,000.

The recent My Genome: our Future European conference in Brussels was packed with speakers from leading UK NHS geneticists, to leading researchers and Genomics England.

The success of the programme is underpinned by the fact that the 100,000 genomes project not only connected to research organisations, but also rooted itself in the NHS and NHS patients.

Thirteen Genomic Medicine Centres (GMCs) were established by NHS England in NHS trusts across the country which had a track-record of providing excellence in genomic services.

These GMCs were responsible for recruiting NHS patients to enrol in the project. The testimonies on the Genomic England website speak for themselves – sequencing offered NHS patients, mainly children, answers where there was previously no diagnosis.

Two-year grant for Genomic Medicine Sweden while Estonia makes strides

Other countries are interested to learn of the successes and challenges of Genomics England’s example and to bring their health systems on board. In 2018, for example, Genomic Medicine Sweden received a two-year grant to strengthen precision medicine throughout Sweden and implement genomics broadly in healthcare so that patients will receive access to new diagnostics and treatment.

The small country of Estonia is 17 years into its long-term genome sequencing programme. It has just announced that over the following four years, some 430,000 people from a population of 1.3 million – one third – will be asked to contribute their DNA to the project.

The samples are stored in a repository, the Estonian Genome Centre, based in the University of Tartu. The genetic data collection, which builds on existing genetic records of over 52,000 Estonians collected since the centre opened in 2001, is the core of a plan to revamp the small country’s healthcare system.

Many of the challenges around genomic medicine are shared challenges. That’s why governments across Europe have come together in the Million European Genomes Alliance with the support of the European Commission to share data safely.

The more understanding we have of the human genome, the more effectively we can diagnose, treat and prevent illness. Working across international borders will help speed up progress and turn science fiction into the UK and Europe’s ability to deliver personalised care that is more and more effective for patients.

Dr Layla McCay is the NHS Confederation director of international relations.

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