23 September 2014
New research shows that referrals to genetic breast cancer clinics have more than doubled in the UK in the last year.
The data reveals what is already known as the ‘Jolie effect’ after actress Angelina Jolie revealed in May 2013 that she had inherited a high-risk BRCA1 gene variant and had a risk-reducing mastectomy (breast removal operation). This raised public (and political) awareness of inherited breast cancer risk.
Researchers in Manchester have now compared data on referrals to 21 family history clinics and genetics services in the UK for potential familial breast cancer in 2012 and 2013. Writing in Breast Cancer Research, they report that referral rates more than doubled to 2.5-fold higher in June and July 2013, dropped slightly 2-fold higher for August – October 2013, and again to around a third higher than the previous year for November-December 2013. For comparison, referrals for potential familial colorectal and other forms of cancer to a subset of the centres surveyed showed no significant rise from 2012-2013.
The conclusion is that increased numbers of women were prompted to raise health concerns regarding their own familial risk of breast cancer following the Angelina Jolie story. The authors note that similar research in the US showed that public awareness of breast cancer rose following the Jolie announcement, but not general understanding of the issues. However, as they found no evidence of inappropriate referrals in their own research they postulate that general practitioners were coping well with a presumed increase in enquiries from women, possibly aided by the timely release of updated NICE guidance on familial breast cancer in June 2013.
Experts have praised the actress for her openness about inheriting a BRCA mutation and opting for risk-reduction measures, saying that it had encouraged other women to approach health services and finding out about their own risk and options to reduce it.
Inherited cancer syndromes such as the hereditary breast ovarian cancer syndrome cause by mutations in the BRCA1/2 genes are relatively rare, but other genetic factors may confer smaller (but still significant) increases in individual disease risk. There is hope that it will eventually become feasible to incorporate genetic risk information in screening programmes to produce more accurate and personalised risk estimates.