Jolie’s mastectomy raises awareness but not education

Angelina Jolie’s decision to undergo a preventive double mastectomy last May received massive attention but apparently did little to educate people about breast cancer risks.

Researchers at the University of Maryland School of Public Health and the Johns Hopkins School of Public Health surveyed more than 2,500 Americans and found the majority were aware of Jolie’s surgery but fewer than 10 percent had an understanding of the BRCA gene mutation. The report was published in Genetics in Medicine.

“Ms. Jolie’s health story was prominently featured throughout the media and was a chance to mobilize health communicators and educators to teach about the nuanced issues around genetic testing, risk, and prophylactic surgery,” said study leader Dina Borzekowski, of the University of Maryland School of Public Health in a news release. “It feels like it was a missed opportunity to educate the public about a complex but rare health situation.”

Study leaders said the Hollywood star’s action resulted in “greater confusion, rather than clarity, about the relationship between a family history of cancer and increased cancer risk.”

Half of those surveyed believed incorrectly that a lack of family history of cancer was linked to a lower than average personal risk of cancer.

“Since many more women without a family history develop breast cancer each year than those with, it is important that women don’t feel falsely reassured by a negative family history,” said Dr. Debra Roter, co-author of the study.

Interestingly, 57 percent of the respondents who knew Jolie’s story said they would have the same preventive operation if they were in a similar situation and carried the BRCA gene. Seventy two percent of both the men and women questioned supported Jolie’s decision to go public about her surgery.

Researchers were encouraged by the influence and power celebrities have to raise awareness but said those messages need to be supplemented with more “purposeful communication” that will help people understand the complexities of the disease.

According to the National Cancer Institute, women with the BRCA1 or BRCA2 mutations have an average breast cancer risk of 60 percent.

Some health experts believe Jolie’s decision to have the surgery was courageous.

“For many women who have lived with the feeling that cancer was inevitable due to their family history, this operation may give them the freedom to move forward without fear,” said Dr. Barry Rosen, surgeon and vice president of medical management at Advocate Good Shepherd Hospital in Barrington, Ill. “I commend Jolie for her courage to take these steps and share her story with the public.”