'Angelina Jolie Effect': BRCA Testing Doubles

Zosia Chustecka

September 03, 2014

Twice as many women were tested for BRCA1/2 mutations in a North American clinic in the 6 months after the revelation by actress Angelina Jolie that she had undergone a prophylactic mastectomy after finding out that she was a carrier.

Importantly, the increase in genetic testing was appropriate, as the proportion of women found to be carriers remained constant, the researchers note.

The finding illustrates "the profound impact that prominent figures like Jolie can have on public awareness of health issues," commented lead author Jacques Raphael, MD, clinical fellow at Sunnybrook Odette Cancer Center in Toronto.

He was speaking at a presscast held by the American Society of Clinical Oncology ahead of the 2014 Breast Cancer Symposium in San Francisco, where the study will be presented.

Increase in Testing, But Still Appropriate

BRCA1/2 mutations dramatically increase the risk for breast and ovarian cancer. The mutations are rare, found in about 2% to 4% of women, but are more likely to be found in those with a family history of breast and ovarian cancer and those with personal risk factors, such as Ashkenazi Jewish descent.

Jolie's announcement, in an article entitled My Medical Choice published on May 14, 2013 in the New York Times, was extensively reported across all media, and at the time, several breast cancer experts predicted that the huge publicity would lead to an upsurge in genetic testing for BRCA1/2 mutations.

"People in the community who see high-risk breast cancer have been very aware of what has been dubbed the 'Angelina Jolie effect,' this phenomenon of more women and their families seeking out genetic testing," commented Harold Burstein, MD, from the Dana-Farber Cancer Institute in Boston, who moderated the presscast.

What is interesting about this study, he said, is not just that the authors were able to document the increase in genetic testing, but they also show that it is "the right people that should be seeking out genetic testing."

 
It's a real triumph for what a public disclosure of a health problem can accomplish.
 

"The key point is that the same percentage of patients actually had the genetic mutation, and the same proportion met the criteria for testing" in the periods before and after the news, he said. "These were not inappropriate people who had somehow been frightened or alarmed by the messages that came forward; rather, because of their clinicians' or their own awareness, these were perfectly appropriate individuals who should be getting genetic counseling who were seeking that genetic counseling.... It's a real triumph for what a public disclosure of a health problem can accomplish for patients and society."

In their study, Dr. Raphael and colleagues documented the upsurge in genetic testing seen in their Toronto clinic. Referrals to the clinic rose from 418 in the 6 months before to 916 in the 6 months after the announcement (referrals increased by 90%).

Of these referrals, 213 individuals (44%) qualified for genetic testing before, compared with 437 (48%) after (genetic testing increased by 105%).

This genetic testing found 29 carriers of BRCA1/2 mutations (6%) among the patients who were referred before, compared with 61 carriers (7%) among those who were referred after the announcement (the number of carriers found increased by 110%).

The fact that the proportion of carriers among those tested remained constant showed that the genetic testing was appropriate, both Dr. Raphael and Dr. Burstein emphasized.

When comparing the women who were tested before and after the announcement, Dr. Raphael noted that there was little difference in the median age (50 and 51 years old, respectively) or in the proportion of women who had already had breast cancer prior to testing (26% before, 30% after the announcement). Also, there were similar proportions of individuals who had a history of breast and ovarian cancer in the family, a history of male breast cancer in the family, or who had breast cancer diagnosed at or before age 35.

There was a slight increase in the number of men who came for testing (10% of those tested before vs 13% of those tested after the announcement).

The figures show clearly that there was an increase in referrals after the announcement, Dr. Raphael said, "but what is interesting is that the quality of referrals remained the same, meaning that appropriate and high-risk referrals were being made to the clinic."

These referrals were well justified, and were not just the result of increased media publicity about the testing. They all met the criterion for testing that has been laid down by the Ontario Ministry for Health, he said.

Dr. Raphael noted that the study is now continuing to see if the increased demand for genetic testing for BRCA1/2 mutations is continuing or if the effect is tailing off after the initial 6 months. If it continues, there will be a challenge to meet the increased demand, both in terms of time and costs, for screening, counseling, testing, and preventive surgery, he said.

"After Angelina Jolie's story, the current model of genetic counseling may need to be revised," the authors suggest.

In Canada, referral costs around $300 and the genetic testing around $1000, Dr. Raphael noted. For the clinic, referral costs went from $146,000 to $275,000 and the genetic testing costs went from $213,000 to $437,000 during the 6-month periods before and after the announcement, he said.

"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," commented Dr. Burstein.

"In this instance, Jolie's choice to share her story really made clinician and patients aware of the importance of genetic testing in a way that they were not before, and helped drive patients into action," Dr. Burstein said in a statement.

The study was supported by the Sunnybrook Odette Cancer Center. Dr. Raphael has disclosed no relevant financial relationships. Coauthor Sunil Verna, MD, from the Sunnybrook Odette Cancer Centre, reports financial relationships with several pharmaceutical companies. Dr. Burstein has disclosed no relevant financial relationships.

2014 Breast Cancer Symposium (BCS): Abstract 44. To be presented September 5, 2014.

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