Mothers commonly talk to their children about genetic test results even if they test positive for a BRCA1 or BRCA2 gene mutation, which sharply increases a woman’s risk of developing breast and ovarian cancer. That is among the findings of a new study from Georgetown Lombardi Comprehensive Cancer Center, which also suggests mothers who don’t discuss their test results are unsatisfied with that decision.
“We know from women we’ve counseled at Georgetown that one of their main considerations of genetic testing for cancer risk is what the results will mean for their children,” says the study’s lead author, Kenneth Tercyak, PhD, director of behavioral prevention research at Georgetown Lombardi.
Tercyak says talking to children about a mom’s risk of developing cancer “may already be on the radar” for women who seek genetic testing, especially if there’s a strong family history of cancer. And he says women tend to reach decisions about whether, when and how to share the news of genetic test results with their children relatively soon after receiving the information, often to educate and help prepare their children for the future.
The study was published online in the journal Cancer Epidemiology, Biomarkers & Prevention. Before receiving genetic counseling and testing, 221 mothers of children ages eight to 21 enrolled in the parent communication study at Georgetown Lombardi, Mount Sinai cancer center (New York) and Dana-Farber Cancer Institute (Boston). Women completed standardized assessments prior to testing and one month after receiving their results.
“We found that more than half of mothers [62.4 percent] disclosed their genetic test results to their children, especially if the children were teenagers,” Tercyak says. “Parents say sharing the information is often a relief and that it’s part of their duty as parents to convey it.”
Mothers also were more likely to disclose their test results if they felt the benefits of sharing the information outweighed its risks. “Younger children are more concrete thinkers. The concept of a gene that causes cancer might be too abstract for some to understand and appreciate, but not others,” Tercyak explains. “We encourage parents to ask themselves ‘Is my child ready to learn this?’”
Tercyak and his team also studied if women were satisfied with their choice about informing their children. Those who didn’t disclose their results were less satisfied with their decision, as were those who felt more conflicted over how to act.
“When parents feel conflicted, overwhelmed or uncertain, it can compromise their judgment, making them second guess and regret their choices,” Tercyak says.
“These can be hard choices about sensitive issues, especially for healthy mothers with younger children who opt to have surgery,” he says, referring to BRCA-positive women who opt for prophylactic mastectomies or oophorectomies. “We associate surgery and doctors appointments with being sick. It can be difficult to explain why a surgery is needed to prevent an illness.”
Tercyak and his team at Georgetown Lombardi have developed a communication tool to help parents talk with their children about hereditary cancer risk and prevention. “We’re evaluating what works best for parents to help them make and act on decisions that are right for them and their families.”
In addition to Tercyak, other authors include Darren Mays, PhD, Tiffani DeMarco, MS, CGC, and Beth Peshkin, MS, CGC, of Georgetown Lombardi; Heiddis Valdimarsdottir, PhD, of Mount Sinai School of Medicine; and Katherine Schneider, MPH, CGC, Judy Garber, MD, MPH, and Andrea Farkas Patenaude, PhD, of Dana-Farber.
The study was supported by the National Human Genome Research Institute (R01HG002686). The authors report having no personal financial interests related to the study.