In modern medicine, few major diseases lack for celebrity representation. But a new study may discredit the cherished notion of public health improvements brought with “raised awareness,” finding most Americans aware of film star Angelina Jolie’s preventive mastectomy but nevertheless ignorant of breast cancer risks in general.
In a survey this summer, three-quarters of more than 2,500 Americans said they’d learned of Jolie’s decision to undergo a mastectomy to treat breast cancer. However, only one in 10 respondents could accurately answer questions about Jolie’s heightened risk for breast cancer. The answer? Women with mutations of the BRCA1 or BRCA2 genes face a risk of breast cancer five times as high as others, with an ovarian cancer risk between 10 to 30 times higher.
Investigator Dina Borzekowski, a research professor at the University of Maryland, described the gist in a statement released ahead of the study on Thursday. "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,” she said. "It feels like it was a missed opportunity to educate the public about a complex but rare health situation."
Nearly half of survey respondents aware of Jolie’s health story could cite her estimated risk of breast cancer before surgery, but fewer than 10 percent knew about heightened risks brought by the two genetic mutations. Moreover, the story left most with even greater confusion about the relationship between a family history of cancer and increased cancer risk.
Approximately half of Americans interpreted “family history” of cancer to mean a lowered personal risk of developing cancer, while others overestimated their personal risk, particularly those who’d both heard Jolie’s story and reported at least one close relative with cancer. The answers? A family history of cancer suggests a heightened genetic risk for the individual, and a woman’s risk of breast cancer falls at 39 percent, rather than 59 percent as feared by the over-estimators.
Debra Roter, director of the Center for Genomic Literacy and Communication at the Johns Hopkins Bloomberg School of Health, expressed most concern for women underestimating their risk of developing breast 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.”
Among other findings, 57 percent of the women who’d heard Jolie’s story professed a willingness to undergo a mastectomy should they learn they carried the genetic mutation. Overall, 72 percent of the respondents praised Jolie for her decision to go public with the news. However, the investigators concluded that future celebrity health stories might also include a “more purposeful communication effort” to assist public understanding of the complexities of modern medicine.
Source: Borzekowski D, Guan Y, Smith KC, Erby LH, Roter DL. Angelina Jolie's Preventive Mastectomy Raised Awareness, But Not Knowledge Of Breast Cancer Risk. Genetics in Medicine. 2013.