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NHS gaps may undermine genomic medicine in UK

23 April 2018
Appeared in BioNews 946

The uptake of genomic medicine could be hampered by funding gaps in the NHS, according to a report by the House of Commons Science and Technology Committee. 

Increased investment to tackle the gaps in the NHS is required if genomics is to become routine care as part of the newly introduced NHS Genomic Medicine Service later this year, according to the report. 

'Genomics has the potential to revolutionise NHS healthcare. We are concerned that this potential is threatened by delays in the NHS's digital projects, reduced genomics training budgets, and potential public concerns over sharing personal health data,' said Norman Lamb, Liberal Democrat MP for North Norfolk and chairman of the committee. 

Development of resources for genomic medicine is already well underway in the UK. The 100,000 Genomes Project, where DNA from over 50,000 individuals has so far been mapped and compiled to compare differences in genetic variations, have led to advances in diagnosis and personalised treatments of cancer and rare diseases. The vast advances resulting from the pioneering project have made the UK a global leader in the field of genomics, the report said. 

The vast volume and complexity of data generated by genomics makes it crucial for healthcare professionals to understand how to interpret it and use it in medical practice. This is where 'The Genomics Education Programme' provides understanding of genomics among NHS England staff, the report states. But the four-year programme is now set to continue with less funding than originally planned. 

Despite big plans for rolling out genomic medicine in the UK, around 82 percent of people in the UK have not heard of genomics or have only some understanding of the field, the report found. With the technology relying on the compilation of genomic data from thousands of people, raising public awareness of the benefits of using genetic information to help treat conditions is essential to ensure people are willing to share their health data, it stated. 

Yet, people are currently less inclined to participate due to public concerns about medical data collection by insurance companies which could, in theory, set premiums based on genetic test results. The report, therefore, calls for a revision of the voluntary ban on insurers' use of such information.

The Committee also heard evidence about other technologies including genome editing

'There is already evidence that the UK public is cautiously optimistic about genetic technologies and are broadly optimistic about the human health applications,' said Professor Otteline Leyser, a researcher at the Sainsbury Laboratory in Norwich and a fellow of the Royal Society. While genome editing is a powerful tool for eradicating serious inherited conditions, there are ethical concerns over the creation of 'designer babies', the report notes, and calls for stringent regulatory and legislative changes. 

'We welcome this report's final recommendation in relation to genome editing,' said Sarah Norcross, Director of the Progress Educational Trust, which publishes BioNews. 'Taking the initiative will help to ensure that the UK attracts funding for pioneering research, and retains its genome editing expertise during and after Brexit.'

NHS Gaps Stall Benefits of Genomic Data for UK Health Care
Bloomberg |  20 April 2018
NHS genomic 'revolution' in treatment jeopardised by cuts, MPs warn
The Independent |  20 April 2018
NHS Genomics threatened by ethics, IT and funding
UK Parliament |  20 April 2018
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