Referrals for genetic counseling and testing for breast cancer risk more than doubled across the United Kingdom after actress Angelina Jolie announced in May 2013 that she tested positive for BRCA1 gene mutation and underwent a double mastectomy. The rise in referrals continued through to October, long after her announcement.
New research, published in Breast Cancer Research (2014; doi:10.1186/s13058-014-0442-6) and based on data from 21 centers, shows that many more women approached their general practitioners 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 causes at least 10% of breast cancers. Women who have the BRCA1 gene mutation have a 45% to 90% risk of developing breast cancer in their lifetime. 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, MD, from Genesis Breast Cancer Prevention and St Mary’s Hospital, Manchester, United Kingdom, wanted to see if there was a lasting effect. They assessed data from 12 family history clinics and nine regional genetic centers in the United Kingdom. They found that there was a 2.5-fold increase in referrals for June and July 2013 immediately after the actress’ announcement, compared to the same 2 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.
“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,” said Evans.
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.
“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 postpreventative surgery and encouraged those who had not previously engaged with health services to consider genetic testing,” said Evans.