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Matt Hancock plans to sequence five million genomes in five years

The health secretary aims to expand the government-funded 100,000 Genomes Project and sequence five million genomes over the next five years and roll out genomic testing across the NHS

Health secretary Matt Hancock has announced plans to sequence five million genomes over the next five years, as part of an initiative to improve the diagnosis of rare diseases.

As part of his plans, the health secretary will significantly expand the current 100,000 Genomes Project, with the NHS and a medical research project called UK Biobank aiming to sequence one million genomes over the next five years.

In the same time period, Hancock also announced plans to sequence five million genomes, bringing together expertise from a range or organisations, including UK Research and Innovation.

“Today’s commitments form part of our bold aspiration to sequence five million genomes in the UK, using groundbreaking technology to do this within an unprecedented five-year period,” said Hancock, commenting on the plans.

Speaking at the Conservative Party Conference in Birmingham, Hancock said the government’s 100,000 Genomes Project, which is due to be completed by the end of 2018, has shown that genome sequencing can significantly reduce the time it takes to diagnose rare diseases.

He said he wants to “go further” and make genome sequencing “available to all”. “From today, our brand new NHS Genomic Medicine Service will roll out access to genomic testing. So for everyone with a rare cancer, and for all seriously ill children, it’ll be available on the NHS,” he said.

“We’ll have tailor-made treatments and tailor-made drugs that are the best fit for a patient, not a best guess. We’re leading the world, and I’m incredibly excited about this technology because of its potential to change lives for the better.”

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The ambitious genome sequencing plans will be led by the NHS Genomic Medicine Service, and from 2019, all “seriously ill children”, as well as adults with hard-to-treat cancers or rare diseases will be offered genome sequencing as part of their care.

The government is also aiming to kickstart a genomics industry, aiming to make the UK a leader in the field.

A report by the Science and Technology Committee, published in April 2018, said genome sequencing brings huge opportunities for the UK, but that currently, the digital infrastructure in the NHS is not up to scratch.

Another key stumbling block is having patients understand and consent to having their data shared. Genomic sequencing, in its very nature, requires patient data, and the public needs to be assured that privacy rules are respected, the committee said.

The government said that “where relevant”, patients will be asked to give informed consent for their genome data to be analysed by security-cleared researchers who can then develop new treatments.

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The more patients are provided with an incentive to give consent the more they can be given life style advice tailored to their genetic preconditions, whether or not these are rare. Imagine the ability to download your genetic profile, plus the results of any tests and/or electronic discharges notes to the app on your smart phone so that it can advice you what to pick from the menu at the restaurant. But that should be under YOUR control, not that of a Googlette, and any revenue from selling your data (after you have given informed consent) should come to YOU (less 30% not 100%).