Government to develop global standards for genomic data sharing

  • 19 May 2021
Government to develop global standards for genomic data sharing

The government will develop global standards and policies for sharing genomic health data under new plans that aim to make the UK a global leader in the area.

The Genome Implementation Plan 2021-22 sets out bold ambitions to improve care, treatment and diagnosis using genome sequencing.

Working with partners in the genomics community, the government set out 27 commitments to deliver over the next 12 months, including the development of global standards and policies for sharing genomic and related health data.

As part of this the National Institute for Health Research, Medical Research Council and Wellcome Trust will fork out a total of £4.5 million over the next five years to the Global Alliance for Genomics and Health to ensure the standards are easily accessible and usable by global genomic and data sharing programmes.

Other ā€œhigh priority actionsā€ include faster diagnosis and treatment of cancer; whole genome sequencing for patients with rare diseases; and the recruitment of five million people to take part in research to accelerate the detection of disease.

The work builds upon the 100,000 Genomes Project, with the government now committing to sequencing one million whole genomes – 500,000 genomes in the NHS and 500,000 in UK Biobank – in a bid to transform healthcare in the UK and create jobs.

Minister for innovation Lord Bethell said: ā€œThe UK has a proud history in developing genetic and genomic technologies which improve the lives of patients across the country and globally.

ā€œThis implementation plan demonstrates the great strides we have already made since the launch of Genome UK and outlines the actions we are taking to progress key commitments over the next year.

ā€œIt is vital that we continue to maintain and develop our global leadership in this field, to realise the full potential offered by genomics.ā€

Professor Dame Sue Hill, NHS England chief scientific officer, added: ā€œThe NHS is already a global leader in genomics and has introduced a range of new cutting edge tests for people with rare diseases and cancer over the last year, despite the pandemic.

ā€œGenomics can truly transform the way patient care is delivered, helping to predict and prevent disease, personalise treatments and ultimately save lives.ā€

The plan is part of the government’s commitment to driving forward health innovation in the UK, according to a statement from the Department of Health and Social Care (DHSC).

It follows a £37m cash injection for data-driven initiatives to boost the UKs life sciences and genomic industries.

Genomics England projects supporting the implementation of the Genome UK strategy are set to receive Ā£17m while the remaining Ā£20m will be invested in projects to ā€œharness UK health data for life sciences researchā€ to make the UK ā€œthe most advanced and data-enabled clinical research environment in the worldā€ the DHSC said.

Genomics England will use the funding to explore public attitudes to, and the potential value of, new-born sequencing, contributing to the increase in data from ethnic minorities in genomic cohorts and data sets, and supporting a next-generation approach to cancer diagnosis.

The funding was announced by health secretary Matt Hancock at the ABPI Annual Conference in April.

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