Survey on experiences and attitudes of parents toward disclosing information to children with genetic syndromes and their siblings in Japan

Many parents face the dilemma of when, how, and what to disclose to their children regarding their genetic conditions. The purpose of this study was to learn about the experiences of parents regarding disclosing information to their children with genetic conditions. A questionnaire was sent to 378 parents of children and adolescents with the following genetic syndromes: 22q11.2 deletion syndrome, Beckwith-Wiedemann syndrome, Noonan syndrome, Russell-Silver syndrome, Kabuki syndrome, Williams syndrome, Prader-Willi syndrome, and Sotos syndrome. Findings were analyzed using descriptive statistics for multiple-choice questions. Of the parents surveyed, 158 (41.8%) responded to the questionnaires. The average age of children with genetic syndromes was 12 years. Sixty-seven parents had disclosed relevant information to their children, whereas 91 had not. Among them (who had disclosed information), out of 53 respondents who answered that their affected child had siblings, 50 had disclosed the genetic condition of the affected child to the siblings as well. Sixty-eight out of 91 respondents who had not told information to affected child were planning to disclose the information in the future. Many respondents who had disclosed information did not regret this. They felt good talking about genetic conditions, and had talked about genetic conditions with the affected children following disclosure. This study contributed to our understanding of the attitudes of parents towards disclosing information to children with genetic syndromes.