Responsibility, culpability, and parental views on genomic testing for seriously ill children

• Published in: Genetics in medicine Vol. 21; no. 12; pp. 2791 - 2797
• Main Authors: Malek, Janet, Pereira, Stacey, Robinson, Jill O., Gutierrez, Amanda M., Slashinski, Melody J., Parsons, D. Williams, Plon, Sharon E., McGuire, Amy L.
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.12.2019; Elsevier Limited
• Subjects: Adult; Biomedical and Life Sciences; Biomedicine; Cancer; Children & youth; Decision Making - ethics; Disclosure - ethics; Female; Genetic Testing - ethics; Genomics; Health Knowledge, Attitudes, Practice; Human Genetics; Humans; Laboratory Medicine; Longitudinal Studies; Male; Neoplasms - genetics; Parenting - psychology; Parents & parenting; Parents - psychology; Sequence Analysis; Social Behavior; Social Responsibility; blame; genomic sequencing; guilt; parent perspectives; responsibility
• ISSN: 1098-3600; 1530-0366
• DOI: 10.1038/s41436-019-0570-6

Purpose We describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents’ perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice. Methods Longitudinal, semistructured interviews were conducted with parents of pediatric cancer patients who underwent exome sequencing (ES) as a part of the BASIC3 study. Interviews were conducted at baseline, one to eight months after results disclosure, and approximately one year after disclosure. Using thematic qualitative analysis, parent interviews were coded with both inductive and deductive approaches. Results Before receiving genomic information, parents indicated that they saw ES as something responsible parents would agree to if their child had cancer. Some parents talked about the possibility of sequencing affecting feelings of culpability for their child’s cancer, worrying that they passed on a cancer-causing gene or made parenting decisions that caused the disease. However, after receiving their child’s ES results many reported feeling relieved of guilt and worry, and felt they had fulfilled parental duties by agreeing to ES for their child. Conclusion These results reveal a layer of meaning that parents associate with GS that may inform clinicians’ approach to care.