Genomic Sequencing in Pediatric Oncology: Perspectives of Parents and Adolescents on Ethical Issues

This study aimed to elicit the perspectives of adolescents with cancer, and parents of children with cancer regarding tumor and germline genomic sequencing in pediatric oncology. Semistructured interviews were conducted with adolescents and parents/guardians of children with cancer. The interview guide included potential benefits of genomic sequencing, heritable cancer predisposition conditions, impacts on family relationships, and secondary findings. Participants reported several ways they believed sequencing results could be valuable, including more targeted therapy and knowledge regarding heritable variants. However, opinions varied on what information would be useful, with many participants reporting an interest only in those results that would directly impact therapy. Several parents were inclined to feel guilty about their children having cancer, whether genetically linked or not. Adolescent patients tended to be protective towards their parents and generally felt they would not blame their parents, even for an inherited condition. Many participants felt they lacked the knowledge to make a completely informed decision on results derived from complex scientific technology. These findings will help inform the process of obtaining informed consent for genomic sequencing in children with cancer.