Genetic testing for people with a previous breast cancer diagnosis

What’s the project about?

The NHS England (NHSE) early diagnosis programmes team are looking to set up a new project, looking at increasing genetic testing for people who have an existing diagnosis of breast cancer.

This is following the success of the Jewish BRCA programme, aimed at offering genetic testing for R208 to Jewish people who have previously had a cancer diagnosis.

The project will be looking to engage people who have either previously refused testing or haven't been offered it.

They’re looking for patient representatives to sit on a new working group, to help shape the project.

Who can take part?

You can apple to become a patient representative if you fit one or more of the following criteria:

• Were diagnosed with breast cancer aged under 40 years

• Were diagnosed with Triple Negative Breast Cancer aged under 60 years

• Were assigned male at birth and have had a breast cancer diagnosis at any age

• Have Ashkenazi Jewish ancestry and have been diagnosed with breast cancer at any age

• Have 1 or more grandparent from Westray (Orkney) or Whalsay (Shetland) and have been diagnosed with breast cancer at any age.

Why do you want me to be involved?

NHSE would like to ensure they are including the expertise of people affected by breast cancer from the beginning of the project. By joining the working group, you can inform how best to improve access to and uptake of genetic testing amongst people who may not otherwise have it.

What will you ask me to do?

You’re invited to apply to join the new NHSE working group as a patient representative. This will involve attending meetings and sharing your views on different areas of this project.

For more information about the working group, you can contact Eleanor at Eleanor.mellor@breastcancernow.org.