FAQs
What is the NHS BRCA Testing Programme?
It is a new 3 year programme of BRCA gene testing launched by the NHS and dedicated to people of Jewish ancestry living in England. Anyone living in England, aged 18 or over, with 1 or more Jewish grandparent (of any type of Jewish heritage) is eligible to take part. More details about how the programme works are found here. Also, extensive FAQs about the programme can be found here.
Why has NHS England launched their new Jewish BRCA Testing Programme?
Prior to the launch of this new programme, NHS BRCA gene testing was only available for Jewish individuals with a strong history in their family of the BRCA-associated cancers (and/or individuals who have/had breast or ovarian cancer). However, research over the last decade concluded that this ‘family-history’ based approach is inadequate.
The Genetic Cancer Prediction through Population Screening Study (GCaPPS) led by Professor Ranjit Manchanda and funded by The Eve Appeal revealed that 60% of individuals with a BRCA gene mutation are ineligible for testing via a system using family-history based criteria. Unfortunately, without this opportunity for testing, these individuals are unable to access potentially life-saving risk management opportunities. In fact, the study highlighted that only 11% of individuals with a BRCA gene mutation in the Jewish community were aware of their status.
Further, the study showed that using an alternative approach – a ‘population-based approach’ – in which BRCA gene testing is offered to Jewish people irrespective of their family history of the BRCA-associated cancers, is preferable as it detects more individuals with a mutation. It also showed that using a population-based approach does not have an adverse effect on the quality of life or psychological state of those testing, as compared to conventional family history based testing.
Additional research illustrated not only the clinical utility of adopting population based BRCA testing approach for the Jewish community, but also its cost effectiveness for the NHS.
As an outcome of GCaPPS, NHS England (NHSE) decided to launch a 3-year programme of BRCA testing for the Jewish community. The programme is part of NHSE’s 10-Year Cancer Plan to catch more cancer early, when they are easier to treat.
Israel has already replaced their family-history based approach to BRCA testing with a population-based system, and England is the second country in the world so far to follow suit.
What part does Jnetics play in the NHS Jewish BRCA Testing Programme?
Jnetics, in partnership with Chai Cancer Care, has been appointment by NHS England to raise awareness of the new NHS Jewish BRCA Testing Programme amongst the Jewish population in England. Jnetics is not involved in the delivery of the testing as is not able to answer questions such as the status of results.
I am thinking about getting tested through the NHS Jewish BRCA Testing Programme but feel like I need to speak to a professional before I make a decision - what are my options?
The programme has a unique genetic counselling helpline considering or currently participating in testing through this programme. The counsellors are able to respond to any clinical or administrative questions and can support individuals in many scenarios including
- those considering testing
- those awaiting their results
- those who have just received their results
- those who have tested positive and are waiting to be seen in their regional clinical genetics department.
The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays. the number is +44 20 3437 6001
In addition, Chai Cancer Care has specialist counsellors who are able to support individuals in their decision making (please note they are not genetic counsellors so can not answer specific clinical questions). You can contact Chai by going to their website or calling their free confidential helpline on 0808 808 4567
Do only women have BRCA genes?
No, both men and women have BRCA genes. They both have 2 copies of BRCA1 and 2 copies of BRCA2 (all genes come in pairs, so we all have two copies of every gene). Since both men and women have BRCA genes, both men and women can have BRCA gene mutations.
Do BRCA mutations occur in only the Jewish population?
No, BRCA mutations are not exclusive to the Jewish population. However they are more common in the Jewish population compared to the general population. 1 in 200-250 people have BRCA mutation in the general population. In contrast, 1 in 40 Ashkenazi Jews and 1 in 140 Sephardi Jews have a BRCA mutation.
Is BRCA testing just for people with a strong history in their family of breast, ovarian and prostate cancer?
No. BRCA gene testing is now recommended internationally for anyone of Jewish ancestry (meaning 1 or more Jewish grandparent) irrespective of their personal or family history of cancer. Testing only those with a strong family history of cancers misses 60% of individuals who DO have the mutation. This has been proven by national research and mirrored by international studies. You can read more about this here.
Is it possible to inherit a BRCA mutation from my dad?
Yes, BRCA gene mutations can be inherited from either your mum or your dad.
What does BRCA stand for?
BRCA is an abbreviation for breast cancer gene. This is because when it was first discovered it was found that mutations in the BRCA genes (BRCA1 and BRCA2) increase an individual’s risk for developing breast cancer. Since then evidence has shown that BRCA mutations increase risk for ovarian, prostate and pancreatic cancer too.
Is BRCA testing important for men too?
Yes! Read more about the many reason why here.
What are the options for women identified as having a BRCA gene mutation?
For breast cancer options include regular self examination, enhanced breast cancer screening, medication (BRCA2 only) and surgery. For ovarian cancer options include surgical removal of ovaries and fallopian tubes. You can read about this in more detail here.
What are the options for men identified as having a BRCA gene mutation?
These include lifestyle choices, symptom awareness and some screening trials. You can read more about this here.
Can an individual with a BRCA mutation take steps to avoid passing on the mutation to their future children ?
Yes. There are options for couples in which one partner has a BRCA mutation can avoid passing on the mutation to their children. These may be available on the NHS or can be accessed privately. You can read more about this here.
Should Sephardi Jews get BRCA tested too?
Yes testing is recommended for people from all types of Jewish ancestries.
If I test negative for BRCA (I.e. don’t have a BRCA mutation) does this mean I am not at risk of getting cancer ?
Definitely not. It simply means that you do not have an elevated risk for the BRCA-related cancers. You could still develop these cancers and other cancer types. It is important that you a adopt healthy lifestyle and take part in all national cancer screening programmes when relevant. If you are ever worried that you have a symptom of cancer always consult a doctor.
If I test positive for BRCA (I.e. I do have a BRCA mutation) does this mean the only cancers I can develop are the BRCA-related ones?
No. As well as having an increased risk for the BRCA-related cancers, you also have the same risk as the general population for all other cancer types. It is important that you continue to reduce cancer risk by having a healthy lifestyle and taking part in any relevant national cancer screening programmes.
If I test positive for BRCA (I.e. I do have a BRCA mutation) does this mean I definitely will get cancer?
No. You will not definitely develop cancer, but your risk for the BRCA-related cancers is significantly increased compared to someone who has working BRCA genes.
If I test positive for BRCA (I.e I do have the BRCA mutation) does this mean that all my children will inherit/will have already inherited the mutation too ?
No. If you have a BRCA mutation there is a 50% chance with every pregnancy that the child will inherit the mutation too. Each pregnancy has an independent risk.
I have just found out that I have a BRCA mutation – what community support is available?
NHS genetic counselling support is available to anyone who tests positive for a BRCA mutation via their regional genetics centre. Additional charitable support, such as information, advice and emotional and peer-to-peer support, is available from Jewish community organisations and national charities. You can read more about this here.
Does Jnetics offer BRCA testing at The Jnetics clinic, or their school/universities programme?
No. The testing offered at the clinic or via the schools/universities programme covers 47 severe and recessively inherited disorders of increased prevalence in the Jewish population. BRCA is not included in this test.
Do women with a BRCA mutation need to have a mastectomy
Women with a BRCA gene mutation are offered a mastectomy as this is proven to dramatically decrease their elevated breast cancer risk. However this surgery is not something they will be forced in to getting. There are alternative risk reducing measures such as enhanced breast cancer screening. These may be a preferable alternative for some women, either in the short or longer term. Genetic counselling will help a women to understand her breast cancer risk, as well as the benefits, risks and implications of the breast cancer risk management options available. To read more about the cancer risk management options for women with a BRCA mutation click here.
Do women with a BRCA mutation need their ovaries removed immediately?
Women with a BRCA mutation will have genetic counselling so that they fully understand their risk for developing ovarian cancer and how removal of ovaries and fallopian tubes can drastically reduce this risk. They are of course not forced in to something so major. In addition, the surgery is often not offered until after the age of 35 which is when the ovarian cancer risks start to rise. Also, the surgery is not recommended until after a women has completed her family. To read more about the cancer risk management options for women with a BRCA mutation click here.
When is the right time for me to get tested for BRCA gene mutations?
Deciding if and when is the best time to get tested is very personal and differs for each individuals. The right time for testing is influences by many factors such as person circumstances, family circumstances, emotional circumstances, family planning, and age to name but a few. You can read more about what to think about when deciding when the right time to test, as well as where to find support here.
