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Scientist to develop tool to help women with breast cancer make decisions about genetic testing

Published: 
27 January 2015

The University of Southampton has received nearly ?150,000 from research charity Breast Cancer Campaign to develop an online 'decision aid' that helps younger women with breast cancer decide on whether or not to undergo genetic testing.

Women diagnosed with breast cancer under the age of 40 are more likely to have inherited mutations in genes such as BRCA1, putting them at significantly increased risk of developing future cancers or having their cancer come back after treatment.

Genetic testing at the point of diagnosis can identify those at a high risk of developing further cancers, who could as a result be offered risk-reducing treatments, such as a double mastectomy.

The University’s Dr Claire Foster is leading a two-year project to find the best ways of providing young women with the information they need about the risks and benefits of genetic testing and enabling them to make an informed decision.

At present in the UK, genetic testing for women with breast cancer usually occurs following treatment, but genetic testing at diagnosis is now becoming more common. However, facing the decision at diagnosis of whether to undergo genetic testing – a decision that could have a long-term impact - can cause significant anxiety and fear at an already difficult time.

Dr Foster will work with women with breast cancer, academics and health professionals to collect information and opinions on genetic testing, and later invite women with breast cancer to test the final decision aid.

“I am delighted that Breast Cancer Campaign has funded this really important study,” says Claire, who is Associate Professor and Director of Macmillan Survivorship Research Group at the University of Southampton. “Having a diagnosis of breast cancer, especially at a young age, can be extremely hard to deal with. Add to this the option to have a genetic test at the time of diagnosis and it can be really hard to decide what to do.

“By working with a great team including social scientists, clinicians, geneticists and women living with the consequences of a breast cancer diagnosis this funding will allow us to begin to develop a much needed resource to support young women in the future to make such decisions.”

Katherine Woods, Senior Research Communications Manager at Breast Cancer Campaign, said: “A breast cancer diagnosis can be a traumatic experience affecting not only the patient but their family, friends and loved ones. Dr Foster’s research will help younger women with breast cancer to feel more comfortable making important decisions about genetic testing at what is already a very challenging time.

“Working alongside patients, clinicians and healthcare professionals, this project will help expand our understanding of the needs of people living with and beyond breast cancer. Dr Foster’s decision aid will help ensure that younger women are empowered to make decisions on genetic testing that could help save their lives, whilst hopefully reducing anxiety around the process.”

Health Sciences

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