Genetic testing of children is typically discouraged by professional groups, but a recent study indicates that some parents, as well as their children, haven’t ruled out the possibility.
Genetic testing of children is typically discouraged by professional groups, but a recent study indicates that some parents, as well as their children, haven't ruled out the possibility.
In the study, involving interviews with 53 parents (and BRCA mutation carriers) and 22 adult-age children, just under half of the participants were supportive of testing children under the age of 18, at least in some circumstances. The findings were published in 2008 in the American Journal of Medical Genetics. Among the adult offspring, a majority were supportive of genetic testing of minors.
That rate of receptiveness is higher than in prior research, perhaps driven in part by a generational shift, says Angela Bradbury, MD, of Fox Chase Cancer Center, the study’s lead author. More research is needed, says Bradbury, who doesn’t personally support testing of minors at this point. “It is possible that the younger generation is much more comfortable with genetic information than prior generations.”
It’s important that a genetic counselor is part of the testing process, says Kara Milliron, CGC, a genetic counselor at the University of Michigan Comprehensive Cancer Center. Physically, genetic testing involves a simple blood draw, she says. “It’s the emotional impact and the translation of that information that can be difficult.”
In a 2003 policy statement on genetic testing, the American Society of Clinical Oncology took a critical stance against testing children, saying it robs the child of the opportunity to one day make that decision themselves, among other concerns.
Pre-adult testing makes sense in specific situations, such as when familial adenomatous polyposis (FAP) runs in the family, they write. (Colonoscopy is recommended beginning at ages 10 to 15 for those with FAP-related gene mutations, according to National Comprehensive Cancer Network guidelines.) But ASCO officials advise against any testing when the risk of developing the cancer in childhood is very low and no preventive steps are available at that stage. Parents rarely are persistent, according to several genetic counselors interviewed.
Beth Peshkin, CGC, a senior genetic counselor at Georgetown, suggests that parents scrutinize their own motivation. She recalls one case in which a father, whose wife had died of ovarian cancer, wanted his teenage daughter to be tested for a BRCA mutation. Testing, she says, “is often being driven by the parent’s anxiety, understandably so.”
Parents should consider, in advance, how they would react depending on various possible outcomes, Peshkin says. What if their child did test positive and no prevention was yet feasible? What if their family has two children and mutation results differ?
Physically, genetic testing involves a simple blood draw. “It’s the emotional impact and the translation of that information that can be difficult.”
The Georgetown genetic counselor feels strongly that no child should be tested on the sly, saying that’s a clear-cut violation of their current and future autonomy. “Because the parents then know something about the child’s [genetic] status and then they are in control of when to disclose that information,” she says.
But Peshkin doesn’t rule out testing a teenager, depending on the circumstances involved. In the case of the widower and the teen, the girl didn’t seem to understand the importance, describing it as “just a blood test,” Peshkin recalls.
Peshkin suggested she think it over and return the following year. At that point, the girl was more mature, driving and dating, and her perspective had crystallized, Peshkin says. “She said, ‘I don’t want to do this right now.’ ”