If a child has a genetic risk of developing a common, treatable?or preventable?disease, should he or she be told? Here are some tips on how you should approach this topic with your patients and their parents.
If a child has a genetic risk of developing a common, treatable-or preventable-disease, should he or she be told?
Current professional guidelines, including American Academy of Pediatrics policy, recommend deferring genetic testing for adult-onset conditions “when the genetic information has not been shown to reduce morbidity and mortality through interventions initiated in childhood” because of the possibilities for psychological harm.
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Journal of Pediatric Psychology
, however, contends that predictive genomic testing, such as that offered directly to consumers, could suggest pediatric interventions that might enable a child to avoid developing certain diseases. Further, concerns about negative psychological effects are based on assumptions unsupported by evidence, according to the researchers.
In a review of 17 articles on the effect of genetic testing cited by the commentary writers, most identified no significant difference in incidence of key measures of mental health such as depression, anxiety, optimism, behavioral problems, and general psychological well-being between those persons who had received positive or negative results from genetic testing.
“Conducting research to understand the actual benefits and harms is important for policy development and practice guidance and can be ethically justified within the pediatric regulatory framework of research that offers a prospect of direct benefit,” say the researchers.
As genetic tests become more readily available, another study suggests that pediatricians should prepare to counsel parents about such testing.
In that study, 219 parents in a large group-practice health plan were offered genetic testing to assess their risk for 8 common adult-onset conditions including diabetes, high cholesterol, heart disease, and certain cancers. In addition, they were asked to evaluate the risks and benefits of testing for their children and their willingness to have their children tested. Those parents who expressed the most interest in learning their own test results also were the most interested in testing their children.
Parents were more willing to have their children tested if they were mothers, perceived greater risk of disease in their child, had more interest in gene-health relationships, expected less difficulty learning about their child’s health risks from genetic factors, and anticipated a more positive response to finding a decreased risk.
In general, parents saw little difference in the value of knowing test results themselves and testing their children. They believed that knowing the results of genetic testing could improve a child’s attention to personal health, contribute to disease prevention, and benefit the child immediately and in the future, note researchers.