Macmillan’s future: How could we support genetic testing in communities? 

Genetic testing finds changes in genes that could cause health problems in the future. It's also used during the diagnosis of rare and inherited health conditions and some cancers. You could be offered genetic testing if you have a health condition, including cancer, that is likely to be linked to an inherited gene change, also referred to as a gene variant. You may also be offered a test if you have a close blood relative who had a genetic test that found an inherited gene variant, meaning family members have a higher-than-average risk of developing a certain type or types of cancer.  

Having more information about genetic risk can support people in making better lifestyle choices and planning for the future. Being aware of your increased risk can also enable you to get support and consider regular screening, risk-reducing surgery or medication to help lower your risk. 

But it’s not as simple as saying genetic testing is a good thing. Some patients will worry about the implications of a genetic test result on their wider family. This is why it’s important for people to be supported to make the right choices for them. 

Through my work, I’m really aware that some communities are more susceptible to inherited diseases than others, making genetic testing even more important. For example, Black men have a 1 in 4 risk of being diagnosed with prostate cancer¹. Familial adenomatous polyposis (FAP) is another is a rare condition that can run in families. If not treated, FAP causes a high risk of bowel cancer. 

On a more a more personal level, as a Modern Orthodox Jew I’m really aware that people of Jewish descent are up to six times more likely to have a fault in the BRCA gene than the general population, leaving them at higher risk of certain cancers, including breast, ovarian, prostate, and pancreatic cancer². According to the BRCA testing programme, the statistics are around 1 in 40 if you are an Ashkenazi Jew or 1 in 140 if you are a Sephardi Jew. This is compared to 1 in 250 if you are a member of the general population³.

In January 2024, NHS England launched a national BRCA gene testing programme for people with Jewish ancestry to identify cancer risk early. The programme has been funded by the NHS for three years which is so exciting.  

In my own community I’m a member of a Whatsapp group for women members of our synagogue, and when they heard about the testing programme people were so relieved that they had a solution to answer their concerns and were keen to be tested. For the older generations, it was relief that they could guarantee that they’ve not passed on this mutation to their family, if the test was negative. And for the younger generations, they now have the option to make health choices that could potentially prevent them from being seriously unwell in the future.  

For the ultra-orthodox community, which is more segregated from modern society, apprehension remains. In some ultra-orthodox Jewish communities, there is hesitancy to understand your genetic information because it could have implications on how you’re viewed within your community. Matchmaking is commonplace within many ultra-orthodox communities, so if you are a carrier of a faulty gene this information could make or break a match. Charities Jnetics and Chai Cancer Care have been running an engagement campaign in collaboration with community leaders and healthcare professionals to help raise awareness and encourage people to come forward for a free test. 

Whilst Macmillan can improve its information and support offer around genetic testing, I think where it can make the biggest difference in helping to overcome taboos is to work in partnership with the communities and expert charities already set up to tackle these issues.  

This could be as big as providing funding to help bolster their existing engagement initiatives. Or as small as educating Macmillan Support Line colleagues to ask the right questions and signpost people to access more tailored support via these community organisations. I am excited to see how Macmillan develops in this space. 

As part of our work to transform Macmillan, we have set up teams of colleagues to tackle the big questions about cancer. 

We are now putting this work into practice and looking at the answers our teams have come up with alongside other evidence to make the best possible decisions about how Macmillan should evolve.  

By doing this, we will ensure we are providing the best most equitable and inclusive support for people with cancer now and in years to come. 

Visit Transforming Macmillan Together for the latest updates.  

 

References

1. Lifetime risk of being diagnosed with, or dying from, prostate cancer by major ethnic group in England 2008–2010
2. NHS rolls out national gene testing to spot cancer risk in Jewish community
3. The NHS Jewish BRCA Testing Programme