Preferences, experiences and needs of parents and adolescents regarding germline sequencing in pediatric oncology.
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BACKGROUND: Germline genetic sequencing to detect cancer predisposition is increasingly used in pediatric oncology, yet little is known about families' experiences or their preferences regarding counseling, recontacting, and data sharing. This study explored these aspects among families of newly diagnosed children with cancer participating in a germline sequencing study. METHODS: Parents of children with cancer of all ages (n = 335) and adolescents aged 12-18 years who were recently diagnosed with cancer (n = 49), who participated in a germline sequencing study at the national pediatric oncology center in the Netherlands, completed questionnaires about their experiences and counseling preferences. Sequencing included analysis of 142 cancer predisposition genes. RESULTS: Both adolescents and parents indicated that children should be involved in decisions about genetic testing, starting around the age of nine years. In this study, most children aged 11 years and older were actively involved. Counseling sessions with physician-researchers were reported as highly valued by both groups, especially compared with written consent forms. Notably, 80% of adolescents and 58% of parents reported that they had not fully read the written materials. Families showed no clear preference for supplementary information being paper, video, or web based. Regarding future recontacting, a large majority of parents (nearly 89%) agreed that hospitals should recontact families if new genetic insights arise, although most emphasized this should only occur with prior consent. Furthermore, nearly three-quarters of parents indicated that pediatric patients should provide their own consent for recontacting upon reaching adulthood. If asked personally, over 90% of parents would consent to being recontacted. Concerning data sharing, over 80% of parents supported sharing genetic data with other hospitals or research institutions for research purposes, but most felt this should require explicit consent and that children should reconsent at maturity. Parents reported prioritizing research that advances childhood cancer care and valued transparency about how data are used. CONCLUSION: Within this sample, families reported valuing early involvement of children, and direct engagement with healthcare professionals in counseling. Parents reported support for recontacting, reconsenting and international data sharing, provided that informed consent is maintained throughout childhood and into adulthood. These findings offer exploratory insights into family perspectives that may inform future research and the development of counseling approaches.