Parents' experiences with requesting carrier testing for their unaffected children

Abstract

Purpose:International guidelines generally recommend delaying genetic carrier testing in children until the child reaches the age of majority or is mature enough to be involved in the decision. Several studies have shown that carrier testing of children does occur in some instances, particularly in siblings of a child affected with a genetic condition. However, little research has explored parents' experiences with the testing process, the impact of knowing a child's carrier status, and whether parents communicate carrier information to their children.Methods:Semistructured interviews were conducted with 33 parents of children who had one of three genetic conditions (cystic fibrosis, hemophi..