The Science and Technology Committee of the House of Commons in the UK has released a report detailing the role and success of genomics and gene editing within the National Health Service (NHS). The report, published today, outlines the cost and clinical effectiveness of whole genome sequencing, how it could be integrated into the NHS, who should be able to access genomic data, and how gene editing can be supported and regulated.

Dame Sally Davies

Professor Dame Sally Davies (Credit: NHS Confederation)

This report is actually a continuation of an inquiry that was started in November 2016, before it was disrupted by the General Election in 2017. After Professor Dame Sally Davies, Chief Medical Officer for England, published her annual report of UK healthcare entitled ‘Generation Genome’ in July 2017, the Science and Technology Committee decided to renew their investigation. The report published today is the outcome of that secondary inquiry.

The report starts by considering the 100,000 Genomes Project, a government-led programme with the intention of sequencing the genomes of 100,000 British citizens within the NHS. The Project passed the halfway mark of 50,000 genomes in February this year, and looks set to complete its ambitious goal in the next twelve months. The Committee praised the work that the Project has done and called for a formal evaluation of how we can use the expertise gained to inform the expansion of genomics into the NHS at large.

At the same time, the Committee cautioned that, while there was significant potential of whole genome sequencing for diagnosing rare diseases, there was still little evidence that it could improve routine care. The Committee advises, therefore, that the UK government should undergo an in-depth evaluation of the Project and publish the results before launching a universal Genomic Medicine Service.

The report also discusses what form the Genomic Medicine Service (GMS) could take and how it may be established within a healthcare system that was first developed in the 1940s. The Government has plans to establish the GMS later this year, but the Committee has raised concerns that the data infrastructure needed for such a thing is not yet in place and is running to a later timeline than the 100,000 Genomes Project. As a result, the report suggests that the budget needed for the infrastructure should be agreed as soon as possible to keep development moving forwards.

A similar issue may arise with regards to the number of trained staff that can run the GMS. At the present time, the NHS doesn’t have a sufficient number of individuals qualified in clinical genomics and the training programmes available are not enough to make up the numbers in the time available. The Committee concluded that Health Education England needed to start planning out a broader training programme to qualify more staff for clinical genomic practices that includes both current employees and those still in the education term of their career.

With regards to data security, the Committee were complimentary of the government’s efforts to implement General Data Protection Regulation, but they also stressed a need for greater education of the general public. Continual progress within the genomics community is reliant on the sharing of data on both a national and international level, and the report acknowledges this. With a stronger education within the general public of what data will be collected, who will be able to access it, and how it can benefit patients, the Committee hope that the government can encourage greater acceptance of genomic technology.

Lastly, the Committee considered the utility and risks of gene editing. The UK has strong regulation that governs the use of gene editing in mammalian cells, and the report encourages the Government to continue to monitor these regulations. If a situation arises that would allow patients to benefit from a change in these regulations, then the Committee encourage the Government to do so by following a similar approach as was used to allow mitochondrial donation last year. The report makes it clear that these regulations should not be changed lightly, but they concede that as the technology progresses, it may become necessary for the laws to change to account for these advances.

Genomics England, an organisation that was set up by the UK Department of Health to deliver the 100,000 Genomes Project and to integrate genomics into the NHS, has responded to the report in a short statement.

genomics england

Sir John Chisholm, Executive Chair, Genomics England

“I welcome the House of Commons Science and Technology Committee Report on Genomics and Genome Editing, published today,” said Sir John Chisholm, Executive Chair of Genomics England. “The report is a thorough and thoughtful exploration of the tremendous opportunities that genomics offers to the UK – its people, its health service and its economy.

“The Committee also recognises the huge strides that we have made – placing the UK at the leading edge of genomics discovery. As the report stresses, now is the time for the UK to overcome remaining challenges and capitalise on its global leadership − delivering genomic medicine in the NHS, improving patient outcomes and realising economic opportunities across the world.”