May 14, 2009 Mothers who share cancer genetic test results with their children are more satisfied with their decision than those who decide not to tell, according to a new study by researchers at the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center. The study also shows, for the first time, what role fathers play in disclosing mother's test results.
These findings will be presented at the 45th Annual Meeting of the American Society of Clinical Oncology (ASCO) in Orlando May 29 - June 2.
"What we're seeing is that both parents make decisions about revealing predictive genetic test results to children within a relatively short period of time even though there is no immediate health implication for children to learn that news," says the study's lead investigator Kenneth Tercyak, PhD, an associate professor of oncology and pediatrics at Lombardi.
Still, the study team found that mothers who made the decision to disclose their test results were more satisfied than those who decided not to disclose the results. The researchers also report that mothers who disclosed test results to their children experienced a more open parent-child communication relationship--a possible benefit of disclosure, Tercyak says.
Researchers interviewed the parents (221 mothers and 124 co-parents who were predominantly fathers) prior to the mother receiving her test results for a BRCA1 or BRCA2 genetic alteration and again one and six months later. BRCA1 and BRCA2 are the two genes scientists know are responsible for a majority of inherited breast and ovarian cancer cases. Sixty-three percent of mothers talked with their children about the test results within one month of receiving them, as did 44 percent of fathers. Sixty-eight percent of the mothers and 55 percent of the fathers subsequently talked with their children about the results within six months of testing. Mothers were more likely to discuss results than were fathers, especially when testing revealed no alterations and when the children were older.
"We needed to better understand how common it is for moms and dads to talk with their children about cancer running in the family and how they reach those decisions," says Tercyak. "Children growing up in families surrounded by cancer can be worried about whether cancer may happen to them someday. Cancer genetic tests provide a piece of that information."
"It is an important part of the genetic counseling process to help parents make decisions about talking to their children about cancer in the family, and what cancer genetic test results do and do not mean for themselves and their family's health," explains Beth Peshkin, MS, CGC, a genetic counselor at Lombardi and a co-author of the study. "Although we do not yet know how to offset familial risks of cancer in future generations, it can be very empowering for parents to promote positive health habits in their children early on, like not smoking, eating a well-balanced diet, exercising regularly, and avoiding excess exposure to the sun."
"Cancer is a family matter. It's not surprising that we're seeing moms and dads working together to share this information with their children," says Tercyak. "Our ongoing research focuses on a family-centered approach to supporting parents' decisions about whether and when to talk with children about cancer genetic test results. Given what we've learned, the timing of these conversations can be important."
Tercyak and the study's co-authors report no related financial interests. Additional partners in this research included scientists from the Dana-Farber Cancer Institute in Boston, MA and the Mount Sinai School of Medicine in New York, NY. The work was funded by a grant from the National Human Genome Research Institute's Ethical, Legal, and Social Implications research program at the National Institutes of Health.
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