Life-saving gene-testing programme launched in the Jewish community

Professor Ranjit Manchanda, from the Wolfson Institute of Population Health at QMUL and St Bart’s, who has been spearheading the programme, called it “a promising and exciting step forward in cancer screening and prevention”.

The initiative has been welcomed by members of the Jewish community. Adam Cramer, who found out he had a BRCA1 mutation several years ago after his sister had had breast cancer, said the new programme would “not only save lives, but would make the discussion around the BRCA much easier, especially for parents who need to tell their kids that they might be carrying the mutation”. His two daughters, 21 and 22, have signed up to get tested, he said.

Katie Kaye, who is a BRCA 1 carrier, with her husband Jonathan[Missing Credit]

Katie Kaye, 35, whose mother died of breast cancer and who is a BRCA1 carrier, also praised the new testing programme, telling the JC: “After I found out about having the BRCA some years ago, I passed the information on to family members, but because my cousin didn’t have a close relative with cancer, it was very difficult for them to get tested. The new programme is great since it shouldn’t be a battle to get a test. [A BRCA mutation] should be something that’s easy to find out.”

Professor Ranjit Manchanda, who is spearheading the NHS Jewish BRCA Testing Programme[Missing Credit]

One in 40 Ashkenazi Jews carry a BRCA gene mutation and one in 140 Sephardi Jews. This is compared to one in 250 of the general population. There is a 50 per cent chance of a carrier passing the mutation onto their children.

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.

BRCA mutation screening is a saliva test carried out at home and sent to a laboratory[Missing Credit]

According to Professor Manchanda, the former NHS clinical testing criteria were failing to identify around 60 per cent of BRCA carriers who do not have a strong family history of cancer. He estimated that overall, 90 per cent of Jewish BRCA carriers in the UK remained unidentified.

He said: “I don’t understand why we need to wait for someone to get cancer to identify someone in whom to prevent it. Given today’s technology and our ability to prevent cancer, this is not necessary. In fact, it is wrong.”

The testing programme, available to people over the age of 18, is part of the NHS’s major drive to catch tumours early when they are easier to treat. The test is taken at home and sent to a laboratory.

If someone is found to be BRCA carrier, they will be 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 will be 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.“This can prevent a BRCA mutation from going into the next generation,” said Professor Manchanda.

Launched after 15 years of research, the benefits of the wide-reaching programme, as well as saving lives, include a reduction in both anxiety and NHS spending, said Manchanda. “There are not many interventions in medicine that can save both lives and monies, but population BRCA testing in the Jewish population is one of them.”

Five thousand people have registered since the programme’s soft launch last February, and so far, the findings were “similar to what was expected, that one in 40 have a BRCA mutation”, said Manchanda.

Announcing the new programme in England, which, aside from Israel, is the only country in the world to offer BRCA testing to the Jewish community, Professor Manchanda said: “I am absolutely thrilled. It is about identifying more people who are at risk and it’s about saving lives.”

He stressed that those found not to carry a BRCA mutation should continue to attend regular NHS screening programmes. “People still need to be breast aware and seek proactive advice from their GP for any unusual symptoms or signs for breast, ovary and other cancers.

“Testing negative does not mean ‘no risk’. It means the risk is the same as average risk or similar risk to anyone else in the population. It is just that those testing negative are not high risk.”

He added that if someone tested negative for BRCA mutations, but had a strong family history of cancer, they could ask their GP about being referred to a regional genetic service for assessment “in case they are eligible for testing for other cancer genes other than BRCA”.

Professor Peter Johnson, national clinical director for cancer at NHS England, which is offering the BRCA screening programme ((Photo: Univdersity of Southhampton)[Missing Credit]

The NHS Jewish BRCA Testing Programme has received the full support of Professor Peter Johnson, national clinical director for cancer at NHS England, who said: “BRCA testing for the people most at risk has the potential to save lives, by allowing them to take steps to reduce the chance of cancers developing or making sure that any cancer can be detected as early as possible,with those at increased risk able to take advantage of surveillance and prevention programmes with their health teams.”

Professor Johnson acknowledged that it “can be daunting finding out whether or not you have an altered BRCA gene, and some people may feel they’d rather not know, but finding out early means people can get the support they need from the NHS.”

Nicole Gordon, CEO of Jnetics[Missing Credit]

The community engagement campaign is being led by Jewish organisations Jnetics and Chai Cancer Care.

Nicole Gordon, CEO of Jnetics said with six in every 1,000 people having a Jewish grandparent, it was now the task of the two organisations “to reach all corners of the community, from the ultra-Orthodox to the non-affiliated”.

Lisa Steele, CEO of Chai Cancer Care told the JC: “Knowledge is power. The BRCA testing programme can empower many people to have that information and to make an informed decision about being tested.”

CEO of Chai Cancer Care Lisa Steele (Photo: Chai Cancer Care)[Missing Credit]

Both organisations offer counselling and Gordon said it was “important that if someone isn’t sure if genetic testing is right for them, they can talk to someone about it.” A dedicated NHS genetics helpline has also been set up for the programme.

Steele said that what people don’t often realise is that fathers have the same 50 per cent chance as mothers of passing the BRCA mutation onto their children, adding: “If one parent finds they don’t have the mutation, it doesn’t mean their children will be negative. Both would need to be tested.”

Chai also runs support groups for people who discover they have the BRCA mutation. “Someone might want to talk through their feelings about preventative surgery, such as the emotional aspect, body image and their relationships,” said Steele.

It was hoped that “this milestone” for the Jewish community would “pave the way for similar programmes across other populations”, said Gordon.

Jnetics CEO Nicole Gordon and Chai Cancer Care CEO Lisa Steele at the launch of the NHS Jewish BRCA Testing Programme[Missing Credit]

Lord David Wolfson of Tredegar, who hosted the launch at the House of Lords, praised the programme as “a real example of how the Jewish community can work together with a national organisation and be of benefit to both.”

He said that healthcare in general needed “to move from just treating people when they are ill to keeping people healthy. This isn’t just about lifestyle, but we should be using technology, and the BRCA screening programme is a great example of this.”

Lord David Wolfson of Tredegar, who hosted the launch event at the House of Lords (Photo: UK Parliament)[Missing Credit]

Lord Wolfson added that Chai Cancer Care was “very close to his heart” as the charity had supported his late sister, JC writer Rina Wolfson, after she was diagnosed with cancer.

For more information and to register for a BRCA test, visit: jewishbrca.org

NHS Jewish BRCA Testing Programme Helpline:

020 3437 6001 or email: jewishbrca.programme@nhs.net

To read about people’s experiences of carrying a BRCA gene mutation, go to:

https://www.thejc.com/community/ignorance-can-be-bliss-but-knowledge-is-power-ylvnt5i2

https://www.thejc.com/lets-talk/i-was-a-brca-carrier-i-had-to-decide-whether-to-have-surgery-e0suid0o