NHS cancer gene database to allow families to check risk

A new NHS database of cancer-linked genes could allow patients and their families in England to know if they are at risk of developing the disease.

People will be able to compare their genetic information to the world’s first registry of 120 genes known to increase the risk of cancer, NHS England said.

People identified as having a hereditary risk will be offered routine exams and screening for certain cancers, including breast and prostate cancer. Patients could also be tested to see if they would respond better to particular treatments, allowing for personalized care.

Health Secretary Wes Streeting said the “life-changing and life-saving” tool would speed up screening and help detect more cancers more quickly.

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

They will receive personalized information on what they can do to reduce their risk of developing cancer or detect it early.

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

NHS England’s national director for cancer told BBC Radio 4’s Today program it was “the first time a health system has brought together all the information on all genetic risks in one place”.

Professor Peter Johnson said he had consolidated tests already offered to patients to check their susceptibility to cancer into one register, “so we can contact people to offer them screening and, in some cases, preventative treatment”.

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

Johnson said although it could be “very intimidating” for people to know their cancer risk, it meant the disease could be detected as early as possible.

The NHS National Hereditary Cancer Predisposition Register follows a similar database for Lynch syndrome which has seen more than 12,000 people offered routine preventive screening after being identified as being at higher risk, according to the NHS.

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

Streeting said: “One in two people will get cancer in their lifetime, but that doesn’t mean the chances are random: many people face a higher risk because of the genes they inherit.

“And while we can’t do anything about inherited genes, we can do something about what we do with that information.”

He said the “world-leading genetic registry” would enable personalized and preventative care to be delivered more quickly.

“This registry will not only drive innovation – it will change and save lives, enabling the NHS to develop individual care, accelerated screening and tailored information to help detect more cancers earlier.”

Claire Rowney, 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 or genetic history”.

She said it should be accessible to all clinicians and designed to ensure people with an increased risk profile receive “joined-up care”.