When Angelina Jolie let the world know that she had a preventive mastectomy based on genetic testing for her BRCA1 status and her heightened breast cancer risk, it was her aim to use her celebrity to boost understanding about genetic risk for the disease.
She may not have succeeded in that goal, according to a new survey, which finds that her decision made more people aware of mastectomy as a preventive measure, but it did not help them to get a handle on the meanings of genetic risk for breast cancer, NPR reports.
Describing her decision last summer in the New York Times, Jolie said she took her personal story public because so many women may not be aware that they are "living under the shadow of cancer."
"It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options," she wrote.
However, although three out of four people were aware that she had a mastectomy, less than 10 percent actually understood her condition, according to the University of Maryland and Johns Hopkins survey, which was published in Genetics in Medicine.
Maryland professor and lead author Dina Borzekowski says Jolie had "a chance to mobilize health communicators and educators to teach about the nuanced issues around genetic testing, risk, and preventive surgery."
Borzekowski calls Jolie's decision to cast her private decision into the public arena "courageous," but also says that her story may have left people confused.
Jolie's mother died of ovarian cancer at age 56, and she carries a BRCA status that puts her at extremely high risk of contracting the disease.
However, the media coverage of the story generally glossed over the rarity of her case and the fact that the mutation she has only accounts for around five to 10 percent of breast cancer cases.
"It feels like it was a missed opportunity to educate the public about a complex but rare health situation," Borzekowski says.
Still, there is a real benefit to Jolie's actions, says Robert Klitzman, director of Columbia University's bioethics program.
"Overall, the point is there was more awareness," Klitzman says, pointing out that increased awareness can lead women to want to talk with their doctors about genetics and cancer risk.