Family-Level Impact of Germline Genetic Testing in Childhood Cancer: A Multi Family Member Interview Analysis

Objectives: Germline genetic testing is increasingly being integrated into pediatric oncology and a large number of families are interested. Current research on the psychological impact of germline genetic testing is limited by a main focus on individual outcomes in parents or children and little is known about its impact at the family level. Our study addresses that limitation by exploring parents' lived experiences of how their family-as a whole-is affected by germline genetic testing for cancer predisposition. Methods: In six families who opted for germline genetic testing in the context of cancer predisposition, both parents of six ill children (five boys) with an average age of 9.67 years (SD = 3.77 years) were interviewed individually (N = 12). Germline genetic testing was performed by exome sequencing followed by analysis of a panel of childhood cancer predisposition genes in pediatric cancer patients and their parents. Their experiences were elicited through semi-structured interviews and the data were analyzed using Multi Family Member Interview Analysis. This qualitative study was conducted at Ghent University Hospital in Belgium. Results: The findings demonstrated that while germline genetic testing was generally viewed as a valuable and straightforward step in the child's oncology trajectory, parents found it difficult to distinguish its impact from the overwhelming stressors of their child's cancer diagnosis and treatment. However, parents recognized that the testing also significantly affected various family-level processes. Five main themes were identified: talking about germline genetic testing, being together matters (more), differences in coping with germline genetic testing between partners, feelings of guilt and mutual forgiveness, and concerns about the future health of the family. Conclusions: Given the expanded use of germline genetic testing in pediatric oncology, it is critical for clinicians to address the family-level impacts of germline genetic testing. Although families are affected by these issues, they often do not raise them due to the overwhelming challenges posed by the cancer diagnosis and treatment. Proactively addressing these themes could improve the support provided to families undergoing germline genetic testing for cancer predisposition.