NHS may not reap potential of genomics medicine project

Delays in digital infrastructure, lack of training and ethical concerns over use of patient data are preventing the NHS from being able to capitalise on the potential of genomics medicine, a report has concluded.

UK parliament buildings

The roll out of genomics medicine in the NHS is being held up by delays in digital infrastructure, lack of training and ethical concerns over use of patient data, a report from the House of Commons Science and Technology Committee has concluded.

The report, published on 20 April 2018, says the 100,000 Genomes Project has established the UK as a world leader in genomics, but says several factors are preventing the NHS from being able to capitalise on the potential.

The Science and Technology Committee also raised concerns that the project, which will use the sequenced genomes for new medical research and to help create a new NHS genomic medicine service, risks losing public support because of a lack of awareness of the benefits it could offer.

The intention is to complete the 100,000 Genomes Project by the end of 2018. The latest figures (as of 23 April 2018) show that 55,742 individual genomes have been sequenced.

The report found that although some whole genome sequencing and other genetic tests are already being delivered on the NHS, “it is clear that significant infrastructure remains to be put in place in order to enable an efficient Genomic Medicine Service”. 

Most notably, delays and funding uncertainty in improving the NHS digital infrastructure will prevent the collection and analysis of genomic data, it concluded.

And it called on the government to provide proper training funding for staff noting that the NHS genomic training programme has had its budget cut substantially.

Public fears over use of personal data must also be addressed with a robust consent process, the committee added.

And an agreement between the government and the Association of British Insurers — which prohibits premiums based on predictive genetic information — must be renewed, it said.

Norman Lamb, chair of the Science and Technology Committee, said: “Genomics has the potential to revolutionise NHS healthcare, but 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.”

John Chisholm, executive chair of Genomics England, said: “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.

“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.”

Last updated
The Pharmaceutical Journal, April 2018;Online:DOI:10.1211/PJ.2018.20204716