UK Government must act to realise the full potential of genomics in the NHS

Philippa Brice

20 April 2018

The House of Commons Science and Technology Committee has today released a major report, Genomics and genome editing in the NHS, the result of an extensive inquiry conducted in 2017.

The report makes five broad recommendations for the UK Government:

  1. Invest in large-scale NHS digital infrastructure – to ensure that genomic data can be collected, analysed and used to inform clinical decision-making 
  2. Prepare the NHS workforce – embed genomics in all relevant training courses and medical revalidation processes 
  3. Ensure public understanding and support - consult on, confirm, and publicise, the consent framework for the planned National Genomic Medicine Service as soon as possible and improve public knowledge about genomics
  4. Capture the commercial value of NHS datasets – integrate genomic and other NHS patient data with that held by private companies to generate income and underpin the development of new drugs and treatments, whilst protecting patient privacy 
  5. Conduct and publish an evaluation of the 100,000 Genomes Project - as a vital source of evidence for evaluating the clinical- and cost-effectiveness of genomic medicine for different conditions and to inform implementation in routine services

The Committee expresses particular concern that budgets for some of these actions remain unallocated or are set to be reduced, and warn that appropriate commitments to investment are vital to prevent unnecessary delays to the introduction of an effective NHS National Genomic Medicine Service planned by NHS England.

Committee Chair Norman Lamb MP said:

The UK is a world leader in genomics, and the establishment of a Genomics Medicine Service could dramatically improve health outcomes of UK citizens. 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.

The PHG Foundation provided extensive written and oral evidence to the inquiry. Director Dr Mark Kroese commented:

This is a robust and far-reaching report; we endorse the conclusions of the Science and Technology Committee and urge the Government to act on their recommendations to ensure that UK citizens gain the maximum benefits from genomic medicine.

PHG Foundation experts are available for comment and interview on request via our media office.