Referrals for genetic counselling and testing for breast cancer risk more than doubled across the UK , after actress Angelina Jolie announced in May last year that she tested positive for a BRCA1 gene mutation and underwent a double mastectomy. The rise in referrals continued through to October long after the announcement was made. This is according to research published in the journal Breast Cancer Research.
New research based on data from 21 centers shows that many more women approached their GPs with concerns. Far from these being women with unfounded concerns, it was women with a family history of breast cancer, which translated into appropriate referrals for testing. This research was funded by Breast Cancer Campaign.
BRCA1 mutation is inherited from a parent, and is the cause of at least ten per cent of breast cancers. Women who have the BRCA1 gene mutation have between 45 per cent and 90 per cent risk of developing breast cancer in their lifetime. If you have a strong family history of breast cancer and a living relative with breast cancer, it is possible to test for the mutation. Clinical guidance in the UK, which was published not long after Angelina Jolie made her announcement last year, recommends that only women who are at a greater risk of developing breast cancer should be referred for genetic testing at a family history clinic or a regional genetics center.
News stories can have short-term effect on health-seeking behavior, but researchers led by Gareth Evans, from Genesis Breast Cancer Prevention and St Mary’s Hospital, Manchester, wanted to see if there was a lasting effect. They assessed data from 12 family history clinics and 9 regional genetic centres in the UK. They found that there was a two and a half-fold increase in referrals by their GPs for June and July 2013 immediately after the actress’ announcement, compared to the same two months in 2012. This rise in referrals continued from August to October with a two-fold increase over the same period the previous year. The researchers believe that during this period of increased interest, there was no greater proportion of inappropriate referrals by GPs.
Gareth Evans, professor of clinical genetics at Genesis Breast Cancer Prevention, says: “Although there was concern that the increase in attendance following Ms Jolie’s announcement might have been from the 'worried well' coming back for an early repeat screen, our research found that the opposite was true. A higher proportion was from women who were late for their test, rather than those who were coming back early.”
The researchers believe that Angelina Jolie’s announcement has made people more aware of the risk of a family history of cancer and risk-reducing strategies that can be taken. They think that more work should be done to improve awareness and access to family cancer services.
Gareth Evans says: “Angelina Jolie stating she has a BRCA1 mutation and going on to have a risk-reducing mastectomy is likely to have had a bigger impact than other celebrity announcements, possibly due to her image as a glamorous and strong woman. This may have lessened patients’ fears about a loss of sexual identity post-preventative surgery and encouraged those who had not previously engaged with health services to consider genetic testing.
“These high-profile cases often mean that more women are inclined to contact centers such as Genesis – and other family history clinics – so that they can be tested for the mutation early and take the necessary steps to prevent themselves from developing the disease.
”Of course, in some cases this may mean a risk-reducing mastectomy, however cancer preventing drugs, such as tamoxifen, and certain lifestyle changes like a healthy diet and more exercise, are also options which many women may consider.”
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Notes to editor:
1. Research article
The Angelina Jolie effect: How high celebrity profile can have a major impact on provision of cancer related services
Gareth D Evans, Julian Barwell, Diana M Eccles, Amanda Collins, Louise Izatt, Chris Jacobs, Alan Donaldson, Angela F Brady, Andrew Cuthbert, Rachel Harrison, Sue Thomas, Anthony Howell, Zosia Miedzybrodzka and Alex Murray
Breast Cancer Research 2014, 16:442
Article available at journal website here.
Please name the journal in any story you write. If you are writing for the web, please link to the article. All articles are available free of charge, according to BioMed Central's open access policy.
2. Breast Cancer Research is an international, peer-reviewed online journal, publishing original research, reviews, editorials and reports. Open access research articles of exceptional interest are published in all areas of biology and medicine relevant to breast cancer, including normal mammary gland biology, with special emphasis on the genetic, biochemical, and cellular basis of breast cancer.
3. Genesis Breast Cancer Prevention is the UK’s only charity dedicated entirely to the prediction and prevention of breast cancer. Genesis’ key message is that being active and healthy can help reduce your risk and prevent breast cancer. For more information, visit www.genesisuk.org.
4. BioMed Central is an STM (Science, Technology and Medicine) publisher which has pioneered the open access publishing model. All peer-reviewed research articles published by BioMed Central are made immediately and freely accessible online, and are licensed to allow redistribution and reuse. BioMed Central is part of Springer Science+Business Media, a leading global publisher in the STM sector.