Shaping a study to support testing family members for BRCA mutations

What’s the project about? 

People with BRCA genes are at higher risk of developing cancers such as breast and ovarian. The testing of family members is often referred to as ‘cascade testing’. 

Researchers want to know how the UK genetic testing system for hereditary genetic conditions, such as BRCA, can be improved.  

They're holding an online workshop for people diagnosed with BRCA1 or BRCA2 genes. They want to hear how the testing of family members for BRCA could be improved, and their experiences with healthcare professional support in this area. 

These discussions could shape design of future study 

Who can take part? 

Anyone over the age of 18 with a confirmed diagnosis of BRCA1 or BRCA2 genes can take part. You don’t need to have previously had cancer.  

The researchers are particularly interested to hear from people from underserved groups in research, such as  

• Ethnic minorities 
• People at lower income 
• People who identify as LGBTQ+  

They’re also keen to hear from people across the different countries in the UK (i.e., England, Scotland, Wales, and Northern Ireland). 

Why do you want me to be involved?  

This workshop could lead to the development of a future study to improve the testing of family members. This would help those at higher risk of cancers, such as breast cancer, have access to surveillance and preventative care 

What will you ask me to do? 

You'll be invited to join a online workshop. The date and time will be organised to suit participants.  

The workshop will last 1 hour and 30 minutes and at it you’ll have the chance to discuss your experience of genetic testing and how you think it could be improved.  

You’ll be reimbursed £40 for your time for the meeting.  

If you prefer, you can also have a 1-2-1 phone or video call.