Women At Risk of Hereditary Breast Cancer Do Not Know How To Communicate Risk with Family
PHILADELPHIA (March 11, 2002) -- A new study by researchers at the Fox Chase Cancer Center in Philadelphia says that women with an increased risk of developing a genetic form of breast cancer are not likely to think about how to communicate results of genetic testing to adult family members nor to children. The study findings were presented at the 26th annual meeting of the American Society of Preventative Oncology in Bethesda, Maryland on Monday, March 11, 2002.
The Fox Chase researchers looked at the intentions and plans for communicating genetic test results to adult family members and to children. The researchers found that most women said that they intended to share the results with their family members and with children, however they had not worked out plans for accomplishing this.
"This study clearly indicates that intentions do not often indicate actual behavior," says Suzanne Miller, Ph.D., principal investigator of the study and the director of Behavioral Medicine at Fox Chase Cancer Center. "We were somewhat surprised with the findings. Most of the women said they would communicate their genetic test results to their family members and after the actual screening, the mindset changed and more than half of the women indicated that they hadn't though about how they would communicate the results, even if they tested positive."
Participants in the study included 196 women who were considered at an increased risk of developing breast cancer due to hereditary factors. The women completed a survey prior to receiving cancer risk counseling. Information was obtained on intentions to communicate risk feedback to family members at baseline (initial counseling) and one-week following the donation of blood for genetic testing. At baseline, 70 percent of the women were certain they would communicate results to their family and 63 percent said they would explain the results to their children regardless of the outcome.
However, after the genetic test, which involved a blood draw, only about 40 percent of the women reported serious intentions to seek advice about or carefully plan their communication to their adult family members even when they were anticipating positive results.
"Genetic testing is a family issue," says Miller. "We want to help people manage their results, provide them with adequate information to make informed decisions and to communicate the information to their family members and to their children," she says. "Women need to be able to clearly communicate what it means to test positive. They also need to make sure than their relatives understand that the risk for breast cancer does not go away if the test is negative," she says. "This study clearly demonstrates that individual communication style should be taken into consideration when offering genetic counseling."
Fox Chase Cancer Center, one of the nation's first comprehensive cancer centers designated by the National Cancer Institute in 1974, conducts basic and clinical research; programs of prevention, detection and treatment of cancer; and community outreach. For more information about Fox Chase activities, visit the Center's web site at www.fccc.edu.
Fox Chase Cancer Center, part of Temple University Health System, is one of the leading cancer research and treatment centers in the United States. Founded in 1904 in Philadelphia as one of the nation’s first cancer hospitals, Fox Chase also was among the first institutions to receive the National Cancer Institute’s prestigious comprehensive cancer center designation in 1974. Fox Chase researchers have won the highest awards in their fields, including two Nobel Prizes. Fox Chase physicians are routinely recognized in national rankings, and the Center’s nursing program has achieved Magnet status for excellence three consecutive times. Fox Chase conducts a broad array of nationally competitive basic, translational, and clinical research and oversees programs in cancer prevention, detection, survivorship, and community outreach. For more information, call 1-888-FOX-CHASE (1-888-369-2427).