Parents' Views on Genetic Testing for Kids with Rare Neurological Issues

Parents of children with rare neurological disorders have a lot to think about when it comes to clinical genetic testing (CGT). A recent study asked 101 parents about their thoughts on this topic. The children involved had conditions like cerebral palsy, epilepsy, and developmental delays. Most parents, around 82% to 91%, saw the positive sides of CGT. They believed it could help explain their child's condition, support research, guide treatment, prevent recurrence, and aid in family planning. However, not everyone agreed on the potential negative effects, such as discrimination, parental worry, and family conflicts. Interestingly, parents with higher education levels were less likely to agree that CGT could provide a causal explanation, support research, or help with family planning. This suggests that education might play a role in shaping parents' views on genetic testing. The study also found that specific symptoms in children, like severe language delay, epilepsy, autism, and microcephaly, were linked to certain attitudes toward CGT. This means the severity and type of symptoms might influence how parents feel about genetic testing. Overall, the study shows that parents generally have positive attitudes toward CGT, but their education level and their child's symptoms can shape their opinions. It's important for healthcare providers to consider these factors when discussing genetic testing with families.