Deadline for BRCA-testing programme announced

People with at least one Jewish grandparent are being urged to sign up for BRCA testing after NHS England announced the deadline for registering is October 31.

Carriers of a BRCA gene mutation are significantly more likely to develop breast cancer or ovarian cancer than the general population and are also at greater risk of other cancers, including prostate and pancreatic.

Research has found that having just one Jewish grandparent greatly increases the likelihood of someone carrying a BRCA mutation. People of Ashkenazi heritage have a one in 40 chance of having a BRCA gene mutation; those of Sephardi descent a one in 140 chance, while people in the general population, one in 250, according to NHS England. Both men and women can be carriers of the mutation and any children have a 50 per cent of inheriting it.

Releasing a joint statement, Nicole Gordon, the CEO of Jnetics and Victoria Portnoi, the CEO of Chai Cancer Care, who are the community engagement partners for the NHS Jewish BRCA Testing Programme, said: “We urge people to come forward to register for this lifesaving BRCA test.”

While there is no limit on the number of people who can sign up, you have to be at least 18.

They said they were “pushing for BRCA testing to continue in the future, but as this has not yet been confirmed, we urge people to test before the deadline”.

Female carriers of the BRCA 1 mutation have a 72 per cent chance of developing breast cancer in their lifetime and a 44 per cent chance of getting ovarian cancer. Female carriers of the BRCA 2 have a 69 per cent chance of getting breast cancer and a 17 per cent risk of ovarian cancer. These figures compare with non-BRCA carriers, who have an 11.5 per cent risk of breast cancer and a 1.5 per cent risk of ovarian cancer.

Male carriers of the BRCA 2 have a 27 per cent chance of developing prostate cancer, compared with a 12.5. per cent risk in the general population. Men with BRCA also have a higher risk of developing breast cancer, and both male and female carriers have a higher chance of getting pancreatic cancer, although the risks are still quite low.

Since the NHS BRCA Testing Programme had its soft launch in January 2023, 32,000 people have signed up – far above the original target of 18,000 –  although not everyone has returned their test, which involves a simple saliva test. 

According to Gordon and Portnoi, around 21,800 people have received their results, with two per cent found to be carriers of the BRCA gene mutation, “in line with what was expected”.

Those who test positive for a BRCA gene mutation are referred to a genetic counsellor and able to explore surveillance and prevention options, such as MRIs, mammograms, ultrasounds, drugs and prophylactic surgery.

A male who is a BRCA 2 carrier can access prostate screening through a research programme.

Carriers who are considering children are eligible to explore the option of pre-implantation genetic diagnosis (PGD), a type of IVF, whereby cells from embryos are screened for the BRCA mutation before implantation.

At Jnetics’ recent “Knowledge is Power” ladies’ night, Vanessa Gold, sister of Ann Summers boss Jacqueline Gold, who died of breast cancer in 2023, said Jacqueline could have survived had she known she was a BRCA carrier earlier.

Jacqueline Gold, who wasn't aware she was a BRCA carrier before she was diagnosed with breast cancer (Credit: Ben Pruchnie/Getty Images)Getty Images

"I urge anyone with even one Jewish grandparent who hasn’t been tested to sign up for the NHS Jewish BRCA Testing Programme,” said Vanessa.

Gordon and Portnoi said people had signed up from all sectors of the Jewish community and beyond, from the strictly Orthodox to the unaffiliated, though the sign-ups from the strictly Orthodox community had been a smaller cohort. “We are now making inroads into the Charedi community to address this,” they said.

Professor Ranjit Manchanda, from the Wolfson Institute of Population Health at QMUL and St Bart’s, who spearheaded the programme, said: “We are engaging with NHS England to look for a sustainable long-standing solution for provision of the testing”, adding that an application for the NHS Genomics Test Directory, which specifies which genomic tests are commissioned, was also being submitted.

A spokesperson for NHS England said they were “still scoping ways in which testing could be delivered in the future and want to encourage as many people as possible to access testing via the current pathway while it is available.”

To register by October 31, go to: jewishbrca.org or click here.

The testing programme is supported by a dedicated NHS genetic counselling hotline: 020 3437 6001. It is open Monday to Friday, 9am to 5pm, with extended hours to 7pm on Wednesdays.

Chai Cancer Care offers support groups for BRCA carriers. Go to chaicancercare.org/services/support-groups/ or click here for more information