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.

The world-first genetic register, developed by the NHS, will collect patient information on over 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.

Ahead of the government’s landmark new National Cancer Plan next month, England’s top cancer doctor said the genetic register comes as part of “a new era of early cancer detection” to help thousands more people to access tailored information, testing and risk-reducing interventions.

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, and 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.

This could soon help identify thousands of men between the ages of 45-61 with known BRCA gene mutations who are at high risk of prostate cancer, and who could benefit if the UK National Screening Committee make a final recommendation on screening for prostate cancer in men with a BRCA variant, and that recommendation is accepted by the Secretary of State.

Around 120 cancer susceptibility genes will be covered by the national genomics registry and will include 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 – the NHS National Inherited Cancer Predisposition Register – 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.

Lynch syndrome is a condition which increases the chance of developing certain cancers including bowel, endometrial and ovarian.

Out of every 100 people with Lynch syndrome, screening prevents between 40 and 60 from developing bowel cancer. More than 12,000 people have already received additional bowel screening after being identified as at higher risk through the Lynch syndrome register.

Colonoscopy screening can detect and remove precancerous polyps or catch cancer at an early stage when it is treatable and curable.

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: “1 in every 2 people will get cancer in their lifetime but that does not mean the chances are random – many people face a higher risk through the genes they inherit.

“And while we cannot do anything about inherited genes we can do something about what we do with that information.

“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: “Genomics is becoming an integral part of how we diagnose and treat cancer across the NHS.

“Through the NHS Genomic Medicine Service, genetic testing is already offered where it provides clear clinical benefit, and the 10 Year Health Plan sets out a clear ambition to embed genomics more routinely across care pathways. The National Cancer Plan will build on that work, strengthening how genomic testing is used across cancer treatment and individual patient journeys.

“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.”

Charlie Grinstead, 32, from London, a civil engineer, was able to access personalised treatment sooner thanks to genetic testing via the NHS Lynch syndrome register.

Charlie was diagnosed with bowel cancer in 2020, aged 26. He underwent surgery to remove the tumour followed by chemotherapy and other targeted treatments. After genetic testing, he was diagnosed with Lynch syndrome and started targeted immunotherapy treatment.

He said: “I tried 3 different chemotherapy drugs and none of them seemed to be working – it was a rollercoaster of side effects and the drugs not really doing anything, but my Lynch Syndrome diagnosis unlocked the door to have immunotherapy treatment – and proved to be the key to my recovery. It was incredibly effective, almost from day 1, and the side-effects were non-existent compared to the chemotherapy, I thought I was taking a placebo because the side effects just weren’t there.

“It was an absolute game-changer and stopped the cancer from spreading. I now no longer need treatment, and it’s been a huge relief to finish treatment – there is a risk the cancer could return but I have regular scans to monitor it. I’m now able to make plans for the future – enjoying precious time with my wife and son, and am just incredibly grateful to spend time with family and friends.”

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

The NHS Genomics Population Health Service as outlined in the NHS 10 Year Health Plan will support the expansion of genomic testing for high-risk groups over the next 10 years.

For background

From July 2023 to November 2025, 12,245 people with Lynch syndrome have received additional bowel screening.