Basis of inquiry: Genomic sequencing is rapidly being incorporated into care for patients diagnosed with cancer. Little is known about why parents of children with cancer consent to sequencing and how they understand and weigh the risks, benefits, and uncertainty inherent in testing.
Purpose/Objectives: This qualitative inquiry was part of the Genomes 4 Kids study which included somatic and germline sequencing in a cohort of 301 prospectively identified pediatric oncology patients with leukemias, central nervous system (CNS), or non-CNS solid tumors treated at St. Jude Children’s Research Hospital. The aims of this aspect of the study were to identify reasons for participation given by parents enrolled in the larger study and perceived risks, benefits, expectations, and hopes.
Methods: Grounded theory methodology guided the research. A convenience sample of 31 parent interviews (of 31 patients) from the total sample of 301 children and adolescents diagnosed with cancer who agreed to be interviewed after enrollment in a sequencing study were interviewed by two trained interviewers. Open-ended Interviews were completed in person, recorded, and transcribed. The constant comparative method was used for analysis. Codes were generated and analysis was completed jointly by five team members.
Findings or Outcomes: Altruism was the most common reason for study participation as well as the most frequently reported benefit of participation. Other benefits included gaining knowledge about the child’s cancer, determining if the cancer was hereditary (indicating risk for other family members), and contributing to research. The most frequent hopes or expectations for study participation were determining if the cancer was hereditary followed by being proactive (to begin treatment or surveillance as early as possible if needed). Most parents recalled risks (possibility of receiving positive results and concerns for insurance discrimination) but many perceived no risk for their child.
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- Jami Gattuso, MSN RN CPON®