A new study by researchers at the Johns Hopkins Bloomberg School of Public Health and the University of Maryland School of Public Health found that while three out of four Americans were aware that Angelina Jolie had undergone a preventive double mastectomy, awareness of her story was not associated with an increased understanding of breast cancer risk. The study, published today in Genetics in Medicine, surveyed more than 2,500 adults nationwide three weeks after Jolie revealed in a New York Times op-ed that she had undergone the surgery because she carried a rare genetic mutation of the BRCA1 gene and had a family history of cancer.
"Ms. Jolie's reach is exceptional. Our study confirms that the public became aware of her health narrative," commented Dina Borzekowski, lead author of the study and professor at the University of Maryland School of Public Health and Adjunct Professor at the Johns Hopkins Bloomberg School of Public Health. "What was lost was the rarity of Jolie's situation and how BRCA is associated with breast cancer."
Among survey respondents who were aware of Jolie's story, nearly half could recall her estimated risk of breast cancer before the surgery, but fewer than 10 percent of those had the necessary information to interpret the risk of an average woman without a BRCA gene mutation relative to Jolie's risk. Additionally, exposure to Jolie's story was associated with greater confusion, rather than clarity, about the relationship between a family history of cancer and increased cancer risk. Among those aware of Jolie's story, about half incorrectly thought that a lack of family history of cancer was associated with a lower than average personal risk of cancer, and among respondents who had at least one close relative affected by cancer, those who were aware of Jolie's story were less likely than those who were unaware of her story to estimate their own cancer risk as higher than average (39 vs. 59 percent).
"These findings suggest that celebrities can certainly bring attention and increased awareness to matters of personal health, but there's also a need for more purposeful public education efforts around complex medical issues such as breast cancer risk," said Katherine Smith, PhD, study author and professor at the Johns Hopkins Bloomberg School of Public Health. "We must continue to improve our understanding of the best ways to get clear, useful information to vulnerable and high-risk populations." The majority of survey respondents who were aware of Jolie's story learned of it through national or local television coverage (61.2 percent) or from an entertainment news piece (21.5 percent), whereas only 3.4 percent read her commentary in the New York Times.
"As we learn more about the genetic contribution to disease risk, it's crucial that health journalists work to ensure an accurate understanding," added Smith. "This includes seeking out scientific and clinical experts who can communicate risk in a way that adequately equips the public to make informed personal health decisions."
- Dina L.G. Borzekowski, Yue Guan, Katherine C. Smith, Lori H. Erby, Debra L. Roter. The Angelina effect: immediate reach, grasp, and impact of going public. Genetics in Medicine, 2013; DOI: 10.1038/gim.2013.181
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