New NHS Jewish BRCA testing programme launched

The NHS Jewish BRCA Testing Programme has officially been launched as of January 2024. Ovarian Cancer Action welcomes this significant step forward in expanding access to genetic testing for individuals at highest risk.

This programme aims to empower more people to assess their risk and take proactive measures to prevent cancer. Here we outline what the programme is and answer some common questions.

What are BRCA gene faults?

BRCA1 and BRCA2 are genes that everybody has. They are called tumour suppressor genes, and their job is to produce a protein that controls cell growth to help prevent cancer. Faults (sometimes called mutations or alterations) in these genes are like spelling errors in an instruction manual. They alter the function of the gene and stop it doing its job. This can cause cells to become abnormal and grow in an uncontrolled way. This is why these faults increase a person’s risk of cancer.

BRCA gene faults can be inherited from our mother or our father, and if we carry one there is a 50/50 chance we pass it onto each child we have, whether we have sons or daughters.

These gene mutations increase risks of breast and ovarian cancer, as well as male breast cancer and prostate cancer (for BRCA2). However, if you know you carry one of these gene faults, you can take action to reduce your risk or have additional screening to catch cancer earlier.

For more details about the risks and options available click here.

Why is this programme focused on Jewish ancestry?

There is a great deal of research showing that people with Jewish ancestry are more likely to carry a BRCA gene fault, particularly the three faults known as “founder mutations”. In fact, 1 in 40 people of Ashkenazi Jewish heritage and 1 in 140 of Sephardi Jewish heritage carry one of these gene faults, yet it’s thought 90% of carriers are not aware. This is much more common than the general population, where up to 1 in 200 people are thought to carry a BRCA gene fault. We know from in-depth research that it is cost effective to test this population as it helps to reduce cases of cancer in the long run.

How will this programme make a difference?

Previously, people with Jewish ancestry had to show they had a family history of cancer in order to qualify for genetic testing on the NHS. We know that this criteria misses many people who carry a BRCA gene fault but don’t have a family history of cancer to report. This means they may only learn of their risk when they, or a family member, are diagnosed with cancer.

This programme gives people with Jewish ancestry but without a family history of cancer the opportunity to take action and reduce their risk before they or their family members develop cancer. To read more about the risk-reducing options as well as screening options available to people at higher risk click here.

Am I eligible?

To be eligible for testing in this programme, you must:

• Have at least one Jewish grandparent
• Be at least 18 years old
• Receive NHS care in England

Is this open to males as well as females?

Yes, this testing is open to males and females. This is because anyone of any gender can carry and pass on faulty BRCA genes, as well as be at increased risk of cancer.

How does the testing work?

Once you’ve registered, you’ll receive a testing kit in the post. The test itself involves giving a sample of saliva, that is then posted back in the test kit to be tested in the lab. The results are then sent to you by post.

If you have any questions along the way there is a Genetic Counsellor Hotline available where you can ask for advice.

What happens if I test positive?

If your test shows you carry a BRCA gene fault, you will have a telephone appointment with a genetic counsellor, and be referred to your local genetics service to discuss your options. The genetic counselling hotline is also available if you have questions before your appointment.

Where do I find out more?

You can read more about the programme, timelines and sign-up here.