Children have the right to get and share information safely.
Children have the right to access and share information that does not cause them harm. This can include information about themselves, such as from genetic tests that can help identify the cause of an existing childhood condition. However, information from genetic tests that predicts the chance of an adult condition, such as Alzheimer’s Disease, could be harmful for children.
Adolescents may experience psychological distress whether or not they undergo testing that predicts the possibility of developing a condition as an adult. There is no ‘right’ answer about when or whether this testing should happen and it should be considered on a case by case basis following consultation between children, their parents and clinicians. Discussion about this issue is important to inform future medical guidelines and provide support and education for parents and children.