EXCLUSIVE: NHS will restart life-saving ‘Jewish cancer gene’ tests

The scheme’s pioneer, Professor Ranjit Manchanda, has hailed the first results as a “tremendous success”.

The NHS Jewish BRCA Testing Programme had opened at the start of 2024, in partnership with community charities Chai Cancer Care and Jnetics.

Registration was open to anyone with at least one Jewish grandparent but closed two months ago.

Now the government has confirmed it will be resumed next year, with the exact date to be announced.

Health and Social Care Secretary Wes Streeting told the JC: “I am proud that under this government we will restore peace of mind to the Jewish community by committing to continue offering BRCA testing to those with at least one Jewish grandparent through the Jewish BRCA pilot programme.

“We know those with Jewish ancestry run a higher risk of carrying the gene, which is linked to prostate and ovarian cancer. This will help those identified to access genetic counselling, regular checks and in some cases preventative surgery all through our NHS.

“The extension of the pilot highlights my commitment to continue to provide genomic testing, and I hope to provide information on how people can access this service soon.

“Programmes like this will help power our shift from sickness to prevention, helping identify potential health problems before they emerge. I am incredibly grateful to the Jewish Chronicle for their work to bring this issue to light.”

Women who are BRCA carriers have a lifetime risk of up to 79 per cent of developing breast cancer and up to 53 per cent for ovarian cancer, and male carriers of the BRCA 2 gene have up to 35 per cent risk of prostate cancer.

Men with BRCA also have a higher-than-average chance of developing breast cancer, and both men and female BRCA 2 carriers also have a greater-than-average chance of developing pancreatic cancer, although the risks remain relatively low.

In the general population, one in 250 people are BRCA gene carriers, but that goes up to one in 40 for Ashkenazi Jews and one in 140 for Sephardi Jews. There is a 50 per cent chance of a parent who is a carrier of passing the gene mutation onto their children, regardless of the gender of the parent or the child.

Identification of the gene means a carrier can consider risk-reducing and preventative options, ranging from medication and regular screenings to a prophylactic mastectomy and oophorectomy.

Around 43,000 patients had signed up for the pilot scheme before registration closed at the end of October, and, so far, 27,000 of the saliva samples have been tested.

Of these, 550 people have been identified as BRCA carriers through the programme, while analysis of samples is still ongoing. The percentage of positive results is in line with expert predictions.

Programmes like this will help power our shift from sickness to prevention, helping identify potential health problems before they emerge. I am incredibly grateful to the Jewish Chronicle for their work to bring this issue to light

The scheme’s pioneer, Professor Manchanda, co-leader of cancer screening, prevention and epidemiology at the Wolfson Institute of Population Health, told the JC: “The programme has been a tremendous success. People were very engaged, and the collaboration between the health service and the community was very successful.

“Before the BRCA testing programme, 90 per cent of BRCA carriers were unidentified. The programme has made huge strides to bridge that gap. A lot of lives will have been saved, [but] a huge proportion still remain unidentified. There is more work to be done.”

Explaining the importance of making the test available, Manchanda said: “Once you find out you are a BRCA carrier, you can prevent yourself getting cancer or pick it up early. The outcomes are better when cancer is picked up early. Life years can be gained and lives saved.

“Cancer is a horrible disease, and the treatment is debilitating and stressful, taking a toll on both patients and families. Families and wider societies will benefit, and the health service will save money on treatment, which is far more expensive than prevention.”

Jess, 34, registered for the NHS testing programme in August 2024 after seeing a post on Instagram.

Having no known history of breast or ovarian cancer in her family, she was “very taken aback” when she received the news that she had tested positive for the BRCA gene.

Jess told the JC: “I had access to a genetic counsellor and have been supported by Chai Cancer Care, who have been amazing. They have really helped me process my feelings.”

While she and her husband initially put plans for a second child on hold while they learnt more about the implications and options for BRCA carriers, they have since decided “to complete our family”.

Jess is now pregnant and plans to undergo preventative surgery in the future. In the meantime, she is under medical surveillance for being at high risk of breast and ovarian cancer, while also being “more alert to changes in my body”.

Jess’s result spurred her four sisters - including two half-sisters on her dad’s side – to sign up for a BRCA test too. She said: “Four out of five of us have the BRCA mutation. Two sisters, who are older than me, have already had their ovaries removed and are planning breast surgery imminently. When one sister had her ovaries removed, they found pre-cancerous cells, so who knows what could have happened if she hadn’t found out she was a BRCA carrier.”

Jess believes that a long-term test programme will let the many Jewish friends and relatives who weren’t aware of the programme get tested. She said: “Resuming the testing would be amazing.”

Chai Cancer Care chair Louise Hager welcomed the news of the scheme’s restart, saying: “The increased prevalence of the mutated BRCA gene among the Jewish community, men and women, and the subsequent increased risk of cancer, makes the NHS Jewish BRCA testing programme essential. For those who receive a positive test, this knowledge has the potential to save lives and allows people to make informed choices, with the NHS offering regular surveillance and/or potentially life-saving preventative treatment.

“At the same time, a positive test result has implications not only for the person themselves, but family members too.

“To support the increasing number of people needing to make complex decisions, Chai has further developed our BRCA support service for individuals, couples and families.

“We are delighted the NHS Cancer Programme and the NHS Genomics Programme are working to establish new arrangements for this vital testing service and look forward to continuing to work with them, Jnetics and our community partners.”

Jnetics, a charity dedicated to prevention and diagnosis of Jewish genetic disorders, is a community engagement partner for the programme. CEO Nicole Gordon told the JC: “The response to the NHS Jewish BRCA testing programme has been truly remarkable.

“This level of engagement shows just how vital this groundbreaking initiative is for our community.

“We’re delighted that the programme will reopen in 2026, allowing us to continue working with NHS England and community partners to identify BRCA carriers and support efforts to reduce the risk of related cancers.”

An NHS England spokesperson said that people with Jewish ancestry who want a test were invited to express interest on the NHS Jewish BRCA Testing Programme website and would be “first in the queue” to receive the registration link when new arrangements are in place.

The spokesperson added that in the meantime, anyone who is eligible for testing in line with what are the current National Genomic Testing Directory criteria “may also contact their GP to review their eligibility for referral to their local clinical genetics service”.

​To register interest for BRCA test, visit: nhsjewishbrcaprogramme.org.uk