Thousands of people at higher risk of developing cancer because of inherited faulty genes will receive regular checks and ongoing tracking through a first-of-its-kind national genetics programme led by the NHS.
The NHS National Inherited Cancer Predisposition Register will collect patient information on around 120 genes linked to increased cancer risk. It aims to fast-track thousands more people to screening and testing, speed access to personalised therapies and trials, and support tailored prevention and early-detection programmes.
Genomic testing is already offered by the NHS for people with cancer and those with a family history of cancer, with tens of thousands tested each year. People identified as having an inherited cancer risk will be added to the single central register after being informed of their diagnosis and receiving advice about associated risks and actions to reduce or detect cancer early.
For some gene changes, such as BRCA variants, those on the register will be automatically invited to routine screening and offered tests for particular cancers, including breast cancer. The register could also help identify thousands of men aged about 45–61 with BRCA mutations who are at high risk of prostate cancer, enabling screening if the UK National Screening Committee recommends it and that recommendation is accepted by the Secretary of State.
The register will include people diagnosed with cancer who carry inherited pathogenic variants and people found to carry susceptible gene variants but who have not developed cancer. Patients tested through the NHS Genomic Medicine Service and clinical genetics services will receive tailored information about risk-reduction and monitoring before inclusion in the registry.
Officials describe the register as part of “a new era of early cancer detection.” Professor Peter Johnson, National Clinical Director for Cancer at NHS England, said the programme could ensure thousands more people are offered screening, tests and the latest treatments, and that knowing one’s inherited risk enables targeted monitoring and prevention to catch or prevent cancers at earlier stages.
The programme builds on the successful Lynch syndrome register, which has identified thousands of people with Lynch syndrome and provided routine preventative screening. Lynch syndrome increases risk of cancers including bowel, endometrial and ovarian cancer. Screening prevents bowel cancer in around 40–60 of every 100 people with Lynch syndrome; from July 2023 to November 2025, 12,245 people with Lynch syndrome received additional bowel screening. Colonoscopy screening can detect and remove precancerous polyps or catch cancer at an early, treatable stage.
Secretary of State for Health and Social Care Wes Streeting said that while inherited genes cannot be changed, acting on that information can provide personalised and preventative care sooner, fast-track screening and save lives.
Professor Dame Sue Hill, Chief Scientific Officer for England and Senior Responsible Officer for Genomics in the NHS, said genomics is increasingly integral to diagnosing and treating cancer. The NHS Genomic Medicine Service already offers testing where there is clear clinical benefit, and the NHS 10 Year Health Plan aims to embed genomics more routinely across care pathways. Bringing inherited cancer risk data together nationally will support systematic follow-up, better-targeted screening and surveillance, and more effective use of genomic insights for earlier diagnosis and improved outcomes.
Patient experience highlights potential benefits. Charlie Grinstead, 32, from London, was diagnosed with bowel cancer aged 26. After genetic testing identified Lynch syndrome, he accessed targeted immunotherapy that proved highly effective where multiple chemotherapy regimens had not. He now has regular scans to monitor for recurrence and has been able to resume life with his family.
The register is managed by NHS England’s National Disease Registration Service. The NHS Genomics Population Health Service, as set out in the NHS 10 Year Health Plan, will support expansion of genomic testing for high-risk groups over the next decade.
For background: from July 2023 to November 2025, 12,245 people with Lynch syndrome have received additional bowel screening.
