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  • Science and Technology Committee

NHS Genomics threatened by ethics, IT and funding

The deployment of the UK’s world-leading genomics capabilities in the NHS is being held back by NHS digital infrastructure delays and reduced training budgets, and risks losing public support due to low public awareness of the benefits on offer.

Genomic medicine has the potential to transform the NHS, and the transformation has been made possible by the 100,000 Genomes Project – which has established the UK as a world-leader in the field. Nevertheless, issues around digital infrastructure, staff training and ethical concerns over the collection and use of patient data risk making the planned NHS Genomic Medicine Service unable to deliver upon this potential.

The report also calls for the Concordat and Moratorium agreed between the Government and the Association of 20 British Insurers – which prohibits insurers from basing premiums on predictive genetic information – to be renewed.

Chair's comments

Norman Lamb MP, Chair of the Science and Technology Committee, 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.”

To realise the full potential of genomic medicine in the NHS, the Government must:

1. Invest in digital infrastructure

Widescale infrastructure development is necessary for the new challenges associated with collecting, analysing, and acting upon genomic data. The Committee is concerned that delays in wider NHS digital infrastructure improvements will constrain the delivery of the Genomic Medicine Service. Furthermore, much of the budget for the required genomics infrastructure is not yet allocated.

Chair's comments

Norman Lamb MP, Chair of the Science and Technology Committee, said:

“We are concerned that the NHS’s delayed digital infrastructure projects will slow down the roll out of genomics in the UK. We are calling on the Government to continue, and increase, its investment in this area and allocate specific funding to the necessary genomics technology and systems.”

2. Prepare the NHS workforce

It is essential that genomics is embedded in all relevant training courses and medical revalidation processes. The Committee is also concerned that the NHS genomic training programme is due to be continued with substantially reduced funding. The Government must provide the necessary training funding.

Chair's comments

Norman Lamb MP, Chair of the Science and Technology Committee, said:

“Evidence to our inquiry warned of gaps in the training needed for the NHS Genomic Medicine Service. We are recommending that the Government conduct the required workforce planning and provide the necessary funding to ensure that UK Genomics is not held back by a lack of capable practitioners.”

3. Ensure public understanding and support

Genomic medicine is blurring the line between research and direct care, and will require data sharing in a manner that challenges the current NHS Constitution. Public support should be achievable given the potential benefit to patients, but 82% of the British public has either never heard of ‘genomics’ or has little understanding of it.

The Government should consult on, confirm, and publicise, the consent framework it intends to apply for the Genomic Medicine Service as soon as possible. Further, it is essential that patients do not refuse consent out of concern about use by insurance providers.

Chair's comments

Norman Lamb MP, Chair of the Science and Technology Committee, said:

“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.”

4. Capture the commercial value of its datasets

Obtaining drugs and treatments from genomic medicine will depend upon sharing data with academic researchers and the pharmaceutical industry. The Government and NHS must explore mechanisms to enable better integration of its genomics data with other NHS data and data owned by private companies, in a manner that protects patient privacy.

The NHS is unique in the range of data it holds, and must capitalise on the value of this data – income generated from NHS data can be reinvested in the NHS and benefit patients in the long-term.

5. Publish evaluation of the 100,000 Genomes Project

The case for introducing whole genome sequencing for rare diseases and some cancers is compelling, but the medical community remains to be convinced that it is ready to replace existing diagnostics for other conditions, including common cancers. The 100,000 Genomes Project is the world’s first large-scale deployment of whole genome sequencing, and is a vital source of evidence for evaluating the clinical- and cost-effectiveness of genomic medicine.

The Government must conduct a full evaluation of the project, and publish the results.

Conventional diagnostics for given conditions should be maintained alongside whole genome sequencing until the case for replacement is proven.

Notes to editors

Genomic medicine involves mapping a person’s whole DNA sequence and, through comparison with many other people's DNA and medical records, searching for elements related to disease. It has great potential to improve patient care, particularly for diagnosing rare diseases and for more personalised targeting of medicines and treatments.

Our inquiry examined the opportunities and challenges involved in that endeavour, including the lessons learnt from the ‘100,000 Genomes Project’—the first large-scale whole genome sequencing exercise in the world. Launched in 2012, the Project is aiming to have completed sequencing of 100,000 genomes by the end of this year. NHS England is now planning to establish an NHS Genomic Medicine Service later this year, making whole genome sequencing available as part of routine care for certain conditions.

Further recommendations include:

  • NHS England should embed processes for evaluating the impact of whole genome sequencing.

  • UKRI should be charged with monitoring the development of genome editing to ensure obstacles to innovation can be overcome

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