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Angelina Jolie’s Story May Have Helped Double BRCA Testing Rates at a Canadian Cancer Center

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Key Points

  • The number of women referred for genetic counseling by physicians increased by 90% in the 6 months after Angelina Jolie’s story was publicized, and the number of women who qualified for genetic testing increased by 105%.
  • Despite the increased number of referrals, the researchers found that the quality of referrals did not deteriorate.
  • The number of BRCA1/2 carriers identified increased by 110%.

A retrospective review of records at an academic cancer center in Ontario, Canada, found that referrals for genetic counseling and the rates of genetic testing performed almost doubled over the 6-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. The increased testing at this center led to a twofold increase in the number of BRCA1/2 mutation carriers identified. The findings were presented yesterday at a presscast in advance of the 2014 Breast Cancer Symposium (Abstract 44)

Alterations the BRCA1 and BRCA2 genes are associated with a dramatically increased risk of developing breast and ovarian cancer. Fortunately, these mutations are very rare—only 2 to 4 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.

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

Study Details

Using data from a familial cancer program at Odette Cancer Centre, researchers compared the number of genetic counseling referrals made 6 months before and after May 2013, when Angelina Jolie’s story became public. The number of women referred for genetic counseling by physicians increased by 90% (from 483 to 916) in the 6 months after Ms. Jolie’s story was publicized, 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 counseling,” said Dr. Raphael.

Despite the increased number of referrals, the quality of referrals 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).

The ‘Jolie Effect’

According to the author, it is likely that Ms. 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 1 year following the release of Ms. Jolie’s experience.

“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 counseling for breast cancer, particularly those women who were most in need of it,” said Harold Burstein, MD, Breast Cancer Symposium News Planning team member and moderator of yesterday’s presscast. “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.”

This research was supported by Sunnybrook Odette Cancer Centre. Sunil Verma, MD, MSEd, FRCP(C), reported a consultant or advisory role with Roche/Genentech, Amgen, Novartis, AstraZeneca, Lilly, and Eisai; speakers’ bureau with Novartis; honoraria from Pfizer, Novartis, Roche/Genentech, Amgen, and AstraZeneca, Boehringer Ingelheim; and research funding from Sanofi-Aventis.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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