Dr Dan Reisel and his team at the EGA Institute for Women’s Health at University College London (UCL) are developing a digital tool to help people with a BRCA gene alteration, that increases their risk of certain cancers, understand their options and make informed decisions about their health.
Everyone has BRCA 1 and BRCA 2 genes. They keep cells healthy by repairing damage in DNA and prevent uncontrolled cell growth. When these genes have a change or ‘alteration’, they become less able to help protect us from developing cancer. BRCA 1 and BRCA 2 gene alterations increase the risk of breast, ovarian, prostate and pancreatic cancer.
Knowing you have a BRCA gene alteration gives you vital options to understand, manage and reduce your risk of cancer with closer monitoring and/or preventive treatments. It does however mean that women and people with gynae organs are faced with difficult decisions to make about their health and family planning. To reduce the risk of breast and ovarian cancer, there is the option of a double mastectomy to surgically remove the breasts and/or a salpingo-oophorectomy to remove the ovaries.
A recent survey by Dr Dan Reisel found that most people have limited knowledge about BRCA alterations before their own diagnosis, and struggled to find clear, reliable and relevant information. Many turned to internet searches and online forums that may be inaccurate or confusing.
This project will develop and test a personalised digital tool, called NavigateBRCA, to help people understand their options and make an informed decision about their health. The decision tool will be created together with people with BRCA alterations and cancer specialists to help ensure it is accurate and easy to use. The team hopes the tool will be shared through NHS clinics, GP practices, health charities and support services.