Project details

Researcher: Professor Mary Porteous

Location: University of Edinburgh

Project title: Understanding the practical and ethical implications of testing newly diagnosed patients for BRCA mutations

Key area: Treatment

The challenge

Women with breast or ovarian cancer who have a BRCA1 or BRCA2 gene mutation have different treatment options available to them both to reduce their risk of developing further cancers (e.g. having a mastectomy rather than lumpectomy) and because certain types of treatment might be better at tackling cancers with a BRCA mutation (e.g. platinum-based chemotherapy). This means that testing women for BRCA mutations soon after they are diagnosed can help inform decisions about their treatment and improve their chances of survival.

However, making decisions about whether to have BRCA mutation testing just after a cancer diagnosis can be incredibly difficult - a positive result could mean a more intensive treatment plan and has implications for family members who may also have the mutation. So it’s important for us to find out how best to deliver this service on both an emotional and practical front, particularly as almost no research has previously been done on this topic.

The science behind the project

As well as interviewing 15 women with breast cancer and 15 women with ovarian cancer about their experiences of being offered (and in some cases having) BRCA testing soon after their diagnosis, Prof Porteous’ team will observe and interview clinical staff. Clinical staff involved in the study will include multidisciplinary team members who make decisions on who to offer BRCA testing to; oncology staff who discuss testing with women; and the clinical genetics staff who discuss the results of BRCA testing with women.

What difference will this project make?

This work will give us some of the first evidence about the emotional, ethical and logistical issues faced by patients and their healthcare teams when offering and delivering BRCA mutation testing to people shortly after their cancer diagnosis. In turn this will identify the best way to support people through this process and enhance future patients’ experiences - making sure people feel supported in making decisions that could ultimately improve their chances of surviving cancer.

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