NHS launches world-first genetic register

Thousands of people at higher risk of developing cancer due to inherited faulty genes will be regularly checked and tracked by the NHS thanks to a first-of-its-kind national genetics programme.

© Warren Umoh/Unsplash

© Warren Umoh/Unsplash

The world-first genetic register, developed by the NHS, will collect patient information on more than 100 genes linked to an increased risk of cancer, with plans for it to help fast-track thousands more people to screening and testing, while speeding up access to personalised therapy and trials.

Genomic testing is offered by the NHS for people with cancer and those with a family history of cancer, with tens of thousands accessing it each year.

Those identified by the NHS as having an inherited risk of cancer will be added to the single central register - the NHS National Inherited Cancer Predisposition Register. For people with changes in certain genes, such as BRCA, they will be automatically invited to screening and offered routine tests for certain cancers, including breast cancer.

Around 120 cancer susceptibility genes will be covered by the national genomics registry, including patients diagnosed with cancer who have been found to have inherited faulty genes, as well as patients found to have susceptible genes variants but do not have cancer.

Patients tested via the NHS Genomic Medicine Service and clinical genetic services will be informed of their diagnosis and provided with information around the associated cancer risks and tailored information about what they can do to lower their chance of developing cancer or detect it early, prior to being added to the registry.

Professor Peter Johnson, national clinical director for cancer at NHS England, said: ‘We are entering a new era of early cancer detection with pioneering research and testing helping us to discover more about how genes influence our chances of developing cancer – and this register could help ensure thousands more people can be offered screening, tests and the latest treatments.

‘Finding out you have an inherited risk of cancer can be life-changing, but it also supports people to access tailored advice on risk-reducing steps and vital monitoring, to increase the chances of any cancers being picked up early or even preventing the disease altogether.

‘As we look to the future of cancer care with our upcoming National Cancer Plan, we know we must continue to find ways to prevent cancers from reaching late stage and this programme will be an important part of helping us save more lives.'

The creation of this multi-gene database follows on from the successful Lynch syndrome register, which has ensured thousands of people diagnosed with Lynch syndrome are identified and offered routine preventative screening.

Expanding the use of genomic testing to identify people at risk of certain cancers and enabling more cancers to be caught earlier will be a major part of the upcoming National Cancer Plan to modernise cancer care for future generations.

Secretary of state for health and social care, Wes Streeting, said: ‘Alongside record levels of investment, I am determined to modernise our NHS so it is fit for the 21st century. By launching this world-leading genetic register for people with genetic conditions with an increased risk of cancer, we can provide personalised and preventative care sooner.

‘This register won't just supercharge innovation - it will be life-changing and life-saving, allowing the NHS to develop individual care, fast-track screening and tailored information to enable more cancers to be caught earlier.'

Professor Dame Sue Hill, chief scientific officer for England and senior responsible officer for Genomics in the NHS, said: ‘By bringing inherited cancer risk information together in a single national programme, we can support more systematic follow-up, improve the targeting of screening and surveillance, and ensure genomic insights are used more effectively to support earlier diagnosis and better outcomes.'

The NHS National Inherited Cancer Predisposition Register is managed by NHS England's National Disease Registration Service.

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