NHS genomic 'revolution' in treatment jeopardised by cuts, MPs warn

Using genetic data to personalise treatments could revolutionise NHS care, but patients risk missing out because of cuts to staff training and technology budgets needed to put it to best use, MPs have warned.

A report by the Commons Science and Technology Committee today said the government also has more to do to reassure the public about the safety of their medical information in the wake of failed NHS data harvesting drives.

The UK has an “internationally enviable position” in genetics and genomic research, the committee said, and the valuable data it holds could be used to save lives and generate revenue for the NHS.

But this can only happen if the patients understand the benefits of the technology and are willing to share their information, the report adds.

“The UK is a world leader in genomics, and the establishment of a Genomics Medicine Service could dramatically improve health outcomes of UK citizens,” said committee chair Norman Lamb MP.

“Genomics has the potential to revolutionise NHS healthcare, but we are concerned that this potential is threatened by delays in the NHS’ digital projects, reduced genomics training budgets, and potential public concerns over sharing personal health data.”

By mapping out their genome – the complete sequence of genes in a person’s DNA – genomic medicine lets us screen patients at risk of disease or determine which treatments might be most effective or have fewer side effects.

But these insights can only be achieved by compiling the genomes of tens of thousands of people alongside information about their health and lifestyle, to reveal the varying effects of the individual differences in the genetic code.

The report praises the NHS for leading the way in this area with its 100,000 Genomes project, which aims to hit its target by the end of 2018 and will be one of the largest genomic libraries in the world.

Participants in need of cancer treatment are already having this genetic information put to use in picking treatment options and an NHS Genomic Medicine Service to be established later this year will increase the numbers who are given full genome testing.

While this could help screen for people at risk of different diseases, funding is needed to ensure the benefits are available to all.

There are also concerns about how the government uses data and how safely it is secured, the report said.

A controversial NHS database including their lifelong GP and hospital records was scrapped in 2016 after concerns about a lack of public awareness or safeguards, and reports of information being sold to insurers.

Mr Lamb added: “We are also concerned that patient fears about the use of their personal data will limit take up among patients.

“The Government must address the understandable public concern by developing a robust consent process and improving public knowledge about genomics.”

The report says the government must monitor public concerns as it rolls out its collection of genetic data, and if necessary put through new legislation to “ban insurers’ use of predictive genetic test results” for setting premiums.

It also calls for constant scrutiny of technologies to edit genetic information, which could eradicate life-threatening disease but have cause concern about the implications of designing babies with desirable traits.

A report last year by the Royal Society found four out five people are optimistic that gene editing technologies could be used to tackle diseases, but almost half think they pose risks on a global scale.

“These technologies aren’t decades away, they are revolutionising our lives right here and right now, and we can only harness the untapped potential of genome editing and data-enabled research if we have the buy-in of the people it is meant to serve,” said Royal Society fellow Professor Otteline Leyser.

“There is already evidence that the UK public is cautiously optimistic about genetic technologies and are broadly optimistic about the human health applications.”

A spokesperson for the Department of Health and Social Care said: “The UK continues to be a world leader in genomics and the Government and life sciences sector are investing £1 billion every year to fund research into new treatments and medical innovations such as the 100,000 Genomes Project.

“But there is more work to be done in this area and these recommendations are in line with our priorities for introducing the new national Genomic Medicine Service in the NHS so patients continue to be at the forefront of innovative new treatments.”