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Daughters of BRCA mutation carriers unaware of their breast cancer risk
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Adult women whose mothers carried the BRCA1 or BRCA2 mutation are largely unaware that they are at increased risk for breast cancer, according to results from a recent survey.
Andrea Farkas Patenaude, PhD, director of psychology research and clinical services at the Center for Cancer Genetics and Prevention at the Dana-Farber Cancer Institute, discussed the results Wednesday during a press conference at the sixth annual Era of Hope conference in Orlando, Fla. The conference aims to advance breast cancer research by bringing together scientists, clinicians and breast cancer advocates to discuss research funded by the Department of Defense Breast Cancer Research Program.
She said the results show the need for educational materials targeting this population of young, high-risk women with the ultimate goal of improving participation in effective screening and risk-reducing interventions. The daughters of BRCA mutation carriers can only make informed health decisions if they are knowledgeable about risk, genetic testing and options for screening and risk-reducing surgery.
Women with the BRCA mutation have a 50% chance of passing the mutation along to their daughters. Mutation of either BRCA1 or BRCA2 is associated with a 55% to 85% increased lifetime risk for breast cancer and a 60% increased risk for ovarian cancer, and these diseases tend to occur earlier in women with the mutation.
Patenaude et al administered written questionnaires and telephone interviews to 40 women aged 18 to 24 years asking them about their knowledge of hereditary breast or ovarian cancer genetics, attitudes, health behaviors and life plans.
Researchers found that the women surveyed were less knowledgeable than women who had undergone genetic counseling. Patenaude said that was not surprising, and added that respondents usually had some knowledge, but often did not know simple things like the general population risk for breast cancer.
“This is very complicated information,” she said. “Even women who’ve gotten genetic counseling find it very difficult to convey much of the details to their daughters.”
As many as 40% of respondents said they were “very worried” about their hereditary risk for cancer and 25% were worried about the cancer risk for their children.
“Their level of stress was really not different from women who’d been told they were mutation carriers,” Patenaude said.
She added that researchers are now using this information to put together a small test of a model intervention and finding out from young women what kind of information they need and the best way to distribute that information. – by Jason Harris
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