A retrospective review of records at an academic cancer centre in Ontario, Canada, found that referrals for genetic counselling and the rates of genetic testing performed almost doubled over the six-month period after Angelina Jolie announced she underwent a preventive double mastectomy because she was a BRCA mutation carrier and had a strong family history of breast and ovarian cancer.

“There is remarkable interest in health stories that affect celebrities. What is fascinating about the Angelina Jolie effect is how powerfully it prompted women to seek genetic counselling for breast cancer, particularly those women who were most in need of it,” said Harold Burstein, MD, Breast Cancer Symposium News Planning team member, moderator of the presscast and ASCO Expert.

“In this instance, Jolie’s choice to share her story really made clinicians and patients aware of the importance of genetic testing in a way that they were not before, and helped drive patients to action.”

The increased testing at this centre led to a two-fold increase in the number of BRCA1/2 mutation carriers identified.

“Detecting more BRCA1/2 mutation carriers early, before they develop cancer, will help lower the incidence of breast and ovarian cancer diagnoses, with appropriate preventive treatments such as mastectomy and oophorectomy. And for women who are already diagnosed with breast cancer and are found to be BRCA positive, preventive treatments can help reduce the risk of developing a second cancer,” said lead study author Jacques Raphael, MD, clinical fellow at Sunnybrook Odette Cancer Centre in Toronto, Canada.

“While this is a small study, it shows the profound impact that prominent figures like Jolie can have on public awareness of health issues.”

Alterations in genes called BRCA1 and BRCA2 are associated with a dramatically increased risk of developing breast and ovarian cancer.

Fortunately, these mutations are very rare - only two-to-four out of every 1,000 women in the general population carry the mutations.

But women who have a family history of breast or ovarian cancer and/or certain personal risk factors, such as Ashkenazi Jewish descent, are more likely to carry a BRCA mutation.

Using data from a familial cancer program at Odette Cancer Centre, researchers compared the number of genetic counselling referrals made six months before and after May 2013, when Angelina Jolie’s story became public.

The number of women referred for genetic counselling by physicians increased by 90% (from 483 to 916) in the six months after Jolie’s story was publicised, and the number of women who qualified for genetic testing increased by 105%.

“After Angelina Jolie’s story was released, physicians were probably more proactive and referred more patients; at the same time, patients were more likely to request and seek genetic counselling,” said Dr. Raphael.

Despite the increased number of referrals, the quality of referrals (proportion of women referred for testing who actually qualified for testing after the counselling based on family and personal history) did not deteriorate.

This indicates that women who were truly at high risk were affected by the announcement, and not only the concerned women without a significant family history.

Researchers also found that the number of BRCA1/2 carriers detected roughly doubled (from 29 before to 61 after Jolie’s announcement).

According to the author, it is likely that Jolie’s announcement and related media coverage had a similar effect on increased genetic testing in other countries.

However, it is unclear whether the effect will be long-lasting.

Dr. Raphael is planning a follow-up study to assess referral and genetic testing rates at one year following the release of Jolie’s experience.

Source: ASCO