The NHS Jewish BRCA Testing Programme

What is BRCA?

BRCA refers to two genes, BRCA1 and BRCA2, that every one of us has. These genes play an important role in the prevention of cancer.

Some people may have a spelling mistake or fault in one of their BRCA genes. Having a BRCA gene fault puts you at increased risk of developing certain types of cancer- specifically breast, ovarian, prostate and pancreatic cancer. 

The tables below show the detailed cancer risks for females and males. Ranges are given, as the risk to each individual depends on multiple factors including family history.

Female Cancer Risk Over Lifetime (to age 80)

Cancer

Breast

Ovarian

Pancreatic

General population

11.5%

1.5%

1.0%

With BRCA1
gene fault

72% (65-79%)

44% (36-53%)

Not elevated

With BRCA2
gene fault

69% (61-77%)

17% (11-25%)

2% (1-4%)

Male Cancer Risk Over Lifetime (to age 80)

Cancer

Breast

Prostate

Pancreatic

General population

Less than 0.1%

12.5%

1.0%

With BRCA1
gene fault

0.4% (0.1-1.5%)

Not elevated

3.0%

With BRCA2
gene fault

4% (2-8%)

27% (21-35%)

4.0%-5.0%

Sources: Cancerresearchuk.org; UKCGG BRCA1 Germline Pathogenic Variant Carriers Management Guidelines for Healthcare Professionals; UKCGG BRCA2 Germline Pathogenic Variant Carriers Management Guidelines for Healthcare Professionals

Both men and women can have a BRCA gene fault, and can pass these on, unknowingly, to their children.

Knowing you have a BRCA gene fault allows you to access a range of options, available on the NHS, that help to manage and reduce cancer risk, as well as avoid passing on the gene fault to your children.

In depth information about these risk management options can be found on the Jnetics website. 

View more info →

BRCA in the Jewish community

Having Jewish ancestry increases your risk of having a BRCA gene fault – 1 in 40 Ashkenazi Jews and around 1 in 140 Sephardi Jews has a faulty BRCA gene, compared to around 1 in 250 individuals in the UK general population.

1 in 250 people in the UK carry the faulty BRCA gene

Among Sephardi Jews this
increases to 1 in 140

And for Ashkenazi Jews
1 in 40

Up to 40% of ovarian cancer cases, and 10% of breast cancer cases in the Jewish community are associated with a BRCA gene fault.

About the Programme

NHS England is now offering free BRCA gene testing for anyone living in England, aged 18 or over with one or more Jewish grandparent, of any type of Jewish origin (Ashkenazi, Sephardi, Mizrahi etc).

In line with medical research, it is now considered best practice to offer BRCA gene testing to all Jewish people, irrespective of their own personal or family history of cancer. A similar approach has already been adopted in Israel.

This new programme provides an unprecedented opportunity to better identify individuals with a BRCA gene fault in the Jewish community in England. This will prevent more cancers and save more lives.

Getting tested involves the following simple steps:

  1. Expression of interest – via this form or via the genetic counselling helpline (+44 20 3437 6001)
  2. Receipt of screening pack in post
  3. Review of pre-test information
  4. Completion of forms and provision of saliva sample 
  5. Returning screening pack
  6. Receipt of results letter. 

For those identified as having a BRCA gene fault:

  • Phone-call appointment on the genetic counsellor helpline
  • Referral for appointment at regional genetics service to explore onward risk management journey 

What you need to know before signing up

Finding out that you have a BRCA gene fault has implications both personally, and for your family. Anyone embarking on a BRCA testing journey needs to be mindful of, and consider, the following:

  1. Potential risk management options if found to be a carrier – more information about the risk management options for individuals with a BRCA gene fault can be found here
  2. Whether the timing is right for you to take a test- what stage of life are you at and what else is going on?
  3. What a positive would mean to you and how it may impact you emotionally
  4. How a positive result would impact your relatives 
  5. What a positive result would mean if you are planning a family – read more about this here

It is important that you take time to think about these factors before testing. If you would like to discuss these issues with a trained professional before going ahead with testing, you can:

  • Speak to a genetic counsellor via the NHS helpline dedicated to this service on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.
  • Speak to one of Chai Cancer Care’s trained counsellors by calling 0808 808 4567
More information →

Once you have completed your test and returned it to the NHS, you will be notified when you can expect to receive your results.

The NHS have advised that during periods of high demand, this can take up to 16 weeks.

More information

More information about BRCA gene testing can be found on the Jnetics website

If you have any questions relating to this programme please email info@jewishbrca.org

For clinical support please use the genetic counselling NHS helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

To speak with a trained counsellor at Chai Cancer Care, please call 0808 808 4567

FAQs

Who can take part in the programme?

Anyone living in England who is aged 18 or over with 1 or more Jewish grandparent

Yes. Both males and females can take part in BRCA testing via this programme. Having a BRCA gene fault increase certain cancer risk for males. Additionally, males with a BRCA gene fault can pass this on to their children, both sons and daughter. BRCA gene testing paves the way for males who are identified as having a BRCA gene fault, to risk management advice and reproductive options to avoid passing on the gene fault to future children. 

No, there is no upper age limit for taking part in this programme. 

Currently the eligibility criteria for NHS testing outside of England are more restrictive than this new programme. Individuals with Jewish origin living outside of England are not able to access BRCA testing based on their ancestry alone. If you have a personal or strong history in your family of the BRCA related cancers we recommend discussing this with your GP. They may refer you for testing if appropriate. Alternatively you may wish to explore private testing options. Please be aware that these vary greatly in the cost and services that they provide. If opting for private testing, we strongly recommend using a service that includes genetic counselling. Please contact Jnetics on 020 8123 5123 or info@jnetics.org if you would like advice about accessing private testing.

No. The programme is for anyone with 1 or more Jewish grandparent of any origin – Ashkenazi, Sephardi or Mizrahi etc

You can take part if you are pregnant. However, you may want to consider the potential emotional impact of finding out you have a gene fault while pregnant or with a newborn. This may be reason to delay your test to a different time. If you want to discuss this further, you can speak to a genetic counsellor via the helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

Yes, however, you may be eligible for more extensive genetic testing than that offered through this programme if you have a personal cancer history. Please check with your GP or treating doctor, who can refer you to your local clinical genetics if appropriate.

More information: This programme offers testing of the BRCA1 and BRCA2 genes. These are the two genes most strongly associated with hereditary cancers in people with Jewish ancestry. Individuals with a personal history of breast or ovarian cancer may be eligible for testing of additional genes. Participating in this programme does not exclude you from accessing other/additional genetic testing for which you are eligible.

Yes, however, you also have the option to be referred directly by your GP to your local clinical genetics service for testing and support. Your local clinical genetics service can provide individualized cancer management and screening recommendations, whether you are found to have or not have the BRCA gene fault.

Yes, however, you may be eligible for more extensive genetic testing than that offered through this programme if you have a family cancer history. Please check with your GP or treating doctor, who can refer you to your local clinical genetics if appropriate.

More information: This programme offers testing of the BRCA1 and BRCA2 genes. These are the two genes most strongly associated with hereditary cancers in people with Jewish ancestry. Individuals with a family history of breast or ovarian cancer may be eligible for testing of additional genes. Participating in this programme does not exclude you from accessing other/additional genetic testing for which you are eligible. 

Getting Tested

There are 6 main steps to getting tested

  1. Expression of interest – via the orange button above or via the genetic counselling helpline (+44 20 3437 6001)
  2. Receipt of screening pack in post
  3. Review of pre-test information
  4. Completing forms and saliva sample
  5. Returning screening pack
  6. Reciept for results letter

For those identified as a carrier there are 2 extra steps

  1. Phone-call appointment on the genetic counsellor helpline
  2. Initial appointment at regional genetics service to explore onward risk management journey

 

You can express your interest in getting tested by pressing the orange button on the top of this page and then filling out the form. Alternatively you can call the dedicated helpline for this programme (+44 20 3437 6001) which is open Monday to Friday 9:00 am to 5:00 pm, with extended hours to 7:00 pm on Wednesdays

By expressing your interest, you are not consenting to get tested but agreeing to be sent a pack in the post which contains more information and the forms/saliva collection kit required for testing.

After expressing your interest, you will receive the following in the post:
– Pre-test information booklet
– Participant form
– Consent form
– Saliva Collection Kit
– Prepaid mailing bag to return sample and forms

This programme does not provide one-on-one genetic counselling as a pre-requisite to testing. All pretest information is available via a pre-test information booklet sent in the post after expressing interest. Pre-test counselling with a genetic counsellor is available as an option and we strongly recommend using this. This can be accessed by calling the genetic counsellor helpline (+44 20 3437 6001) which is open Monday to Friday 9:00 am to 5:00 pm, with extended hours to 7:00 pm on Wednesdays.

You should receive your pack with in 1 week of expressing interest. If there are delays you will be notified

You can call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

You can call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

Your pack will contain a pre-paid return mailing bag. You simply need to put your forms and sample in here and post back.

The last page (back cover) of your pre-test booklet contains detailed instructions to return your forms and samples. Please note that you must return the pre-paid mailing bag from a post office, not from a street post box.

If you have any questions, or need a replacement for any of the pack components, please call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

You can call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

You can call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

You can call the genetic counsellor helpline on +44 20 3437 6001 to speak to a qualified genetic counsellor. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

Chai Cancer Care has emotional counsellors who have experience supporting individuals making this decision. You can find out more via www.chaicancercare.org

Genetic Counsellor Helpline

The helpline is run by qualified genetic counsellors working at the Institute of Cancer Research.

Yes. You are welcome to call the helpline anonymously with any questions. You are not obligated to participate in the programme or proceed with genetic testing by calling the helpline.

You can call the genetic counsellor helpline on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

YES! You can use the helpline whenever you need it; before you have expressed your interest, when you are reviewing the pre-test information and forms, when you are providing your sample, when you are awaiting your results, when you are about to read your results letter, once you’ve read your results letter etc.

Anyone who receives a positive result (identified as having a BRCA gene fault) will be given a phone call appointment via the helpline too. The appointment time will be stated on the results letter.

Results

You should expect to receive your results with in 6-12 weeks of returning your completed pack

You will receive your results via a letter sent in the post. The letter will have a front sheet so that you can choose when/where to find out your results

Your results are kept completely confidential and are stored securely on an NHS database.

Based on this result, you are unlikely to be at particularly high risk of developing the cancers associated with BRCA1 and BRCA2 gene faults (breast, ovarian, pancreatic, and prostate cancers). However, as for everyone else, you may still develop cancer, and if you have worrying symptoms you should see your GP without delay. You are recommended to participate in routine NHS cancer screening programs.

Additionally, this test does not rule out all hereditary causes of cancer. You should inform your GP if there is a strong pattern of cancers in your family. Especially if you have had cancer yourself, if there is a strong pattern in your family of cancers of the same type and/or cancers arising at a young age. Even though you have not been found to have a BRCA gene fault, sometimes your GP may still refer you for extra cancer screening or to Clinical Genetics for evaluation for extra genetic testing. 

It is standard practice for genetic test results to be shared with your GP. The participant form that you will receive in the pack sent to your home will ask for your GP details.

There is an option to opt for results NOT to be sent your GP, if this is your preference. 

If I find out that I have a BRCA gene fault...

You are booked in for a phone call with a genetic counsellor. Your results letter specifies when this is. The genetic counsellor will call at the stated time. You may also ring the genetic counsellor helpline (+44 20 3437 6001) if you feel you need to discuss this result sooner than your allotted time or to arrange a more suitable time.

You will also be referred to your local Clinical Genetics Service. They will send you an appointment to discuss your individual cancer risk in more detail, as well as your cancer risk management options. Additionally, they can discuss options for informing your relatives of this result so that they may pursue genetic testing if they choose. Please contact the genetic counsellor helpline (+44 20 3437 6001) if this doesn’t happen.

This depends on where you live. If identified as having a BRCA gene fault, you will be referred via the programme to your regional genetics centre, which is where you will see a genetic counsellor or geneticist face-to-face and start to discuss your risk management options in more depth. Different centres have different timelines. The maximum wait for your first appointment should be 6 months. 

While you are waiting for your referral, you are welcome to call the helpline to speak with a genetic counsellor at any time. 

Please contact the helpline if you have any queries about your referral or if 6 months has passed with out hearing from your regional genetics. Jnetics and Chai will not be able to advise on this. 

Chai Cancer Care, the Jewish Community’s leading cancer support organisations, can provide emotional support to individuals identified as having a BRCA gene fault (and their family members). To find out more visit https://chaicancercare.org/

You can also speak to a genetic counsellor via the genetic counselling helpline dedicate to this service at any point. 

There are several options for managing BRCA-related cancer risk. These differ between males and females. You can read more about your options here on the Jnetics website.

Those identified as having a gene fault will be able to explore their risk management options with a genetic counsellor or geneticist at their regional genetics centre.

If you want to speak to a genetic counsellor to discuss risk management options before testing, you can call the genetic counsellor helpline on +44 20 3437 6001.

Chai Cancer Care are able to offer support to those considering taking part in BRCA gene testing, as well as those awaiting results and for those identified as having a BRCA gene fault. 

Additional support resources are listed here on Jnetics website.

 

Jnetics has more information on their website about BRCA gene testing. Please click here to access this.  

Links to additional information can be found here on Jnetics website.

 

Until the launch of this programme in early 2023, in order to access BRCA testing on the NHS, Jewish people needed to demonstrate a strong history in their family of the BRCA-related cancers.

However, research has shown that this approach is not good enough. The Genetic Cancer Prediction through Population Screening Study (GCaPPS), study led by Professor Ranjit Manchanda and funded by the Eve Appeal, showed that up to 60% of individuals with a BRCA gene fault are missed by these current test criteria. Additionally, 90% of individuals in the population who carry a gene fault remain unidentified and unaware of this.

Internationally, it is now considered best practice to offer BRCA gene testing to all Jewish people regardless of family history. This approach has already adopted in Israel. Using this method in our community will inevitably prevent more cancers and ultimately save more lives.

To read more about the research that led to the launch of this new programme click here.

This is an NHS England initiative supported by The Institute of Cancer Research (ICR) and North West Thames Genomic Service Alliance. The team at ICR are responsible for the clinical testing pathway i.e. sending out kits, reporting results, running the genetic counselling helpline, referring participants to their regional genetics if identified as having a BRCA gene fault etc.

Any questions you may have relating to the status of your results or referral, or any other clinical questions, should be directed to the NHS helpline via  +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.  

Jnetics and Chai have together been officially appointed as partners to NHS England, to raise awareness of BRCA-related cancer and this new testing service to Jewish people living in England.  Jnetics and Chai are not responsible for delivery of the testing. 

Any questions you may have relating to the status of your results or referral, or any other clinical questions, should be directed to the NHS helpline via  +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.  

The insurance industry differentiates between a predictive genetic test and a diagnostic genetic test

  • If you have not had a cancer, the BRCA1/BRCA2 genetic test is termed a predictive test. Insurance companies cannot ask you to disclose the results of predictive test. Insurance companies cannot ask you to disclose the results of predictive generic test for the majority of policies.
  • If you have had a relevant cancer, the BRCA1/BRCA2 genetic test is termed a diagnostic test. Insurance companies may ask for the results of your genetic test if you open a new life, income protection or critical illness insurance policy. Any policies already in place will not be affected.
  • You can more information about insurance from the Association of British Insurers.

www.abi.org.uk/data-and-resources/tools-and-resources/genetics/genetic-testing/

It is normal NHS practice to store DNA samples and data in case they are needed for analysis in the future either for yourself or for a family member. 

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