20,000 sign up for NHS Jewish BRCA testing programme

Anyone with a Jewish grandparent can register to be tested for the genetic mutation which increases cancer risk


Journalist Olivia Wayne interviews Dr Angela George and Sami Webber at Jnetics Ladies' Night (Photo: Sara Epstein)

Twenty thousand people have signed up for the NHS Jewish BRCA Testing Programme since its launch four months ago.

The ground-breaking initiative invites anyone over the age of 18 with at least one Jewish grandparent to take a simple saliva test to determine whether they carry the BRCA1 or BCRA 2 gene mutation, which are more likely to cause breast, ovarian and, in the case of BRCA 2, prostate cancer. There is also a higher incidence of pancreatic cancer in BRCA carriers.

Speaking at the Jnetics Ladies Night “Knowledge is Power” event in north-west London, the charity’s CEO, Nicole Gordon, said: “This year marks a milestone in our collective journey towards better healthcare outcomes for the Jewish community in England.

“In just a few months, since [the NHS Jewish BRCA Testing Programme’s] inception, over 20,000 individuals have signed up for the programme – an incredible testament to the importance of this initiative. This pro-active approach not only improves outcomes, but ultimately saves lives.”

According to an NHS spokesperson, since the testing programme was launched, 4,000 tests have already been completed in their laboratories, of which 112 have been found to have an altered BRCA gene. 

Gordon said that it was “a sobering fact” that one in 40 Ashkenazi Jews and one in 140 Sephardi Jews carried BRCA gene mutations, significantly higher than the one in 250 of the general population.

Female carriers of the BRCA 1 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 BRCA2 have a 69 per lifetime cent chance of getting breast cancer and a 17 per cent risk of ovarian cancer. A woman in the general population has an 11.5 per cent risk of breast cancer and a 1.5 per cent chance of getting ovarian cancer.

Male carriers of the BRCA 2 have a 27 per cent chance of developing prostate cancer. 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 relatively low.

Until the programme’s launch, anyone wanting to be tested for the mutation on the NHS was required to show a strong family history of cancer.

Experts predict that the new programme, spearheaded by Professor Ranjit Manchanda from the Wolfson Institute of Population Health at QMUL and St Bart’s, will identify 150 per cent more carriers of the faulty BRCA gene and enable them to have early access to surveillance and prevention services.

Gordon told guests: “The significance of this programme cannot be overstated. By offering BRCA testing to individuals aged 18 and above with at least one Jewish grandparent, we are taking a ground-breaking step towards detecting those at higher risk of developing cancer before it develops.”

If someone is found to be BRCA carrier, they are referred to a genetic counsellor and will be able to explore prevention options, such as MRIs, mammograms and ultrasounds, preventative drugs and prophylactic surgery, including a double mastectomy and an oophorectomy. A male who is a BRCA 2 carrier can access prostate screening through a research programme.

BRCA carriers wishing to start a family are eligible to explore the option of pre-implantation genetic diagnosis (PGD), a type of IVF, where cells from embryos are screened for the BRCA mutation before implantation.

Jnetics is leading the community engagement campaign, together with Chai Cancer Care, and will be rolling out a comprehensive education programme on BRCA testing.

Gordon said: “For those that do test positive, we offer unwavering support throughout their BRCA journey, through counselling and advice.”

Sami Webber, a BRCA1 carrier, whose mother died from ovarian cancer, told the guests how she had undergone a preventative double mastectomy and IVF with pre-genetic diagnosis to conceive her two daughters and was planning on having a salpingo oophorectomy to remove her ovaries and fallopian tubes. In an interview with journalist and TV presenter Olivia Wayne, Webber said: “Every individual has to make their own decision, but what I would say is that knowledge is power.”

Also on the panel was Dr Angela George, clinical director of genomics and consultant medical oncologist in gynaecology at the Royal Marsden Hospital, who said: “The best types of cancers are the ones we can prevent, and the new BRCA screening programme has the ability to change the legacy of your family forever.”

Gordon told the guests that Jnetics was now able to test for 47 hereditary conditions in the Jewish community through their programme, which encompassed year 12 pupils and university students.

In collaboration with the Centre for Reproductive and Genetic Health, Jnetic’s online clinic had facilitated screenings for 6,500 young adults, including couples thinking of starting a family, she said.

"With one in three of us being a carrier of one of those conditions, that awareness means that they can move forward confidently and ensure a future where their children are free from the life-threatening recessive genetic conditions that we screen for.”

Gordon called on the Jewish community to “embrace” scientific advances “to make a lasting impact on the community’s health and wellbeing”.

She said: “Let us continue to strive for a future where every individual has the knowledge they need to lead their healthiest life.”

Jnetics receives little government funding and is reliant on the community to support its work.

For more information on the NHS Jewish BRCA Testing Programme, click here

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