The NHS has begun rolling out a national genetics programme to regularly monitor people at increased risk of cancer due to inherited gene changes.
Announced on 24 January, the initiative establishes a central register of genetic risk markers and aims to improve early detection and prevention across England.
“By systematically identifying people at inherited risk, we can offer tailored screening and interventions, helping catch cancers earlier and improve outcomes,” said Dr Jane Smith, NHS England’s director of genomics.
How does the register work?
The NHS National Inherited Cancer Predisposition Register is a world‑first database that will bring together information on about 120 genes linked to higher cancer risk and allow patients and family members to compare their genetic profiles against it.
Individuals identified with relevant genetic variations, through NHS genomic testing or clinical genetic services, will be added to the register and offered regular monitoring and tailored follow‑up care.
This may include specific screening invitations, routine tests such as mammograms or prostate checks, specialist consultations and, in some cases, recommendations for risk‑reducing treatments.
The register will include people who already have a cancer diagnosis with inherited risk, as well as those who carry risk variants but have not developed cancer.
Health leaders say it provides a more systematic way to invite at-risk patients for appropriate monitoring and interventions.
The NHS said that patients could also be tested to see whether their genetic profile means they might respond better to particular treatments, enabling more personalised care.
Growing the portfolio of NHS genetic testing initiatives
This initiative builds on previous national investment in genomic healthcare, including a £175m government funding package to speed up genomic research and improve early diagnosis of rare diseases and cancer across the NHS.
The programme supports the NHS Long Term Plan’s 10-year focus on prevention, using genetic insights to identify high-risk patients early and offer targeted screening before disease develops.
The programme also builds on existing NHS genetic initiatives, including the Lynch syndrome register.
Lynch syndrome, which raises the risk of bowel, endometrial and ovarian cancers, has already seen more than 12,000 people offered additional screening after being identified as at higher risk.
Patient data will be securely stored under NHS data protection standards, and expanded genetic counselling will support people joining the programme.
Family members may also be helped to understand their own risk and access early screening if needed.
The programme comes ahead of next month’s National Cancer Plan, which will outline how genomic tools and early detection strategies are being embedded across NHS cancer care pathways.
NHS England estimates that tens of thousands of people could benefit from the register in the coming years, with potential for even broader coverage as the programme expands.
Patients will receive invitations for monitoring via NHS letters or clinical services, supported by expanded genetic counselling where needed.