Teen, Parent Response Explored for Cardiomyopathy Genetic Tests

Parents with unaffected children and positive predictive cardiomyopathy genetic testing results are more likely to experience negative emotions about the results, but they have better family functioning scores, according to a study published online July 13 in Circulation: Genomic and Precision Medicine.

Priyanka Ahimaz, from Columbia University Irving Medical Center in New York City, and colleagues examined how parents involve their children in the cardiomyopathy genetic testing process and assessed the impact of genetic results on family dynamics. A survey was completed by 162 parents of minors and 48 adolescents who were offered genetic testing for a personal or family history of cardiomyopathy.

The researchers found that the likelihood of disclosing positive genetic results to their child was increased for parents whose child had cardiomyopathy. The likelihood of experiencing negative emotions about the result was higher among parents with unaffected children and positive predictive testing results, but they also had better family functioning scores than those with negative predictive results. Most adolescents preferred to have their results communicated directly, while parents were divided on whether they or their child should receive the results first.

"As a medical geneticist caring for children with a personal or family history of cardiomyopathy, understanding how young people and their parents process the genetic test results and adjust after genetic testing are critically important," a coauthor said in a statement. "Genetic testing for cardiomyopathy could help to save lives, yet also has the potential to have a major impact on young people by limiting their sports participation or socialization with peers and may increase feelings of vulnerability during formative teenage years."