NHS cancer gene database to allow families to check risk

A new NHS database of genes linked to cancer could enable patients and their families in England to find out whether they are at risk of developing the disease.

People will be able to have their genetic information compared to the world-first register of 120 genes known to increase the likelihood of getting cancer, NHS England has said.

Those identified as having an inherited risk will be offered routine check-ups and screening for certain cancers, including breast and prostate cancer. Patients could also be tested to see whether they would respond better to particular treatments, allowing for personalised care.

Health Secretary Wes Streeting said the “life-changing and life-saving” tool would fast-track screening and allow more cancers to be caught sooner.

Tens of thousands of cancer patients and those with a family history of the disease already undergo genetic testing on the NHS every year. Those known to have a higher risk profile will be added to the new register.

They will be given tailored information about what they can do to lower their chance of developing cancer or detect it early.

The NHS said it was building the register as part of a 10-year plan to improve prevention and treatment of cancer.

NHS England’s national cancer director told BBC Radio 4’s Today programme it was “the first time any health care system has brought together all the information about all the genetic risk into a single place.”

Prof Peter Johnson said it pulled together the tests patients were already offered to check their cancer susceptibility into a single register, “so that we can contact people to offer them screening and in some cases preventative treatment”.

This will allow practitioners to “keep tabs on people” and offer them new tests and treatments as they are rolled out, he added, while stressing it would be “incredibly confidential and secure”.

Johnson said that while it could be “very daunting” for people to find out their cancer risk, it meant the disease could be picked up as early as possible.

The NHS National Inherited Cancer Predisposition Register follows a similar database for Lynch syndrome which saw more than 12,000 people offered routine preventative screening after they were identified as being at higher risk, according to the NHS.

Charlie Grinstead, a 32-year-old diagnosed with bowel cancer in 2020, said his Lynch syndrome diagnosis gave him access to immunotherapy after unsuccessful chemotherapy – and proved to be the “the key to my recovery”.

Streeting said: “One in every two 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.”

He said the “world-leading genetic register” would allow personalised and preventative care to be provided 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.”

Claire Rowney, the chief executive of Breast Cancer Now, said the move would “transform the lives of women who are at increased risk of breast cancer due to their family history or genetics”.

She said it had to be accessible to all clinicians and designed to ensure those with an increased risk profile received “joined-up care”.