The NHS has launched a national register to track people with inherited gene changes that raise cancer risk, offering regular checks, tailored prevention and faster access to testing, screening and treatments.
The NHS National Inherited Cancer Predisposition Register will hold information on around 120 genes linked to increased cancer risk. Its aims are to speed identification of people eligible for screening and genomic testing, improve access to personalised therapies and clinical trials, and support targeted prevention and early-detection programmes.
Genomic testing is already available in the NHS for people with cancer and for those with a family history; tens of thousands are tested each year. Once patients are informed they carry an inherited cancer risk and given advice about the implications and risk-reduction options, they will be added to the single central register.
For some gene changes, such as BRCA variants, people on the register will be automatically invited to routine screening and offered tests for associated cancers, including breast cancer. The register could also identify men aged about 45–61 with BRCA mutations who are at higher risk of prostate cancer and enable screening if advised by the UK National Screening Committee and accepted by the Secretary of State.
The register will include both people who have been diagnosed with cancer and carry inherited pathogenic variants, and people found to carry susceptible variants who have not developed cancer. Patients tested through the NHS Genomic Medicine Service and clinical genetics services will receive tailored information about monitoring and risk-reduction before being included.
NHS leaders describe the programme as ushering in “a new era of early cancer detection.” Professor Peter Johnson, National Clinical Director for Cancer at NHS England, said the register could ensure thousands more people are offered screening, tests and the latest treatments, and that knowing one’s inherited risk enables targeted monitoring to catch or prevent cancers earlier.
The programme builds on the established Lynch syndrome register, which has identified thousands with Lynch syndrome and delivered routine preventative screening. Lynch syndrome raises the risk of bowel, endometrial and ovarian cancers. 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 find cancer at a treatable stage.
Secretary of State for Health and Social Care Wes Streeting said inherited genes cannot be changed, but acting on the information allows personalised, preventative care sooner, fast-tracks screening and can 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 cancer diagnosis and treatment and that bringing inherited-risk data together nationally will support systematic follow-up, better-targeted surveillance and more effective use of genomic insights.
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 coming decade.
Patient experience illustrates potential benefits. Charlie Grinstead, 32, from London, was diagnosed with bowel cancer at 26. Genetic testing identified Lynch syndrome and allowed access to targeted immunotherapy that worked when multiple chemotherapy regimens had not. He now has regular scans to monitor for recurrence and has been able to resume family life.
The new national register aims to make such targeted, preventative care more systematic across the population, increasing the chances of detecting and preventing cancers at earlier, more treatable stages.
