Pediatric Professionals' Attitudes about Secondary Findings in Genomic Sequencing of Children

Abstract

To evaluate the attitudes of pediatric professionals towards the March 2013 statement of the American College of Medical Genetics and Genomics that whenever genomic sequencing is ordered, the laboratory must look for 56 genes known to be highly penetrant in high-risk groups, and these results must be reported to the clinician regardless of patient age or consent. E-mail and postal survey sent to 332 members of the American Academy of Pediatrics (AAP) Section on Bioethics (SOB) (n=183), Section on Genetics and Birth Defects (n=148), and 1 member of both groups regarding the mandatory search and reporting of secondary findings from genomic sequencing performed on children. Of 332 potential participants, 12 asked to be excluded and 181 partially or completely responded (181/320, or 56.6%). Two were subsequently excluded (179). More than 80% believed that patients and parents (guardians) should have the right to refuse to be informed of secondary findings. Only 34.7% of AAP SOB members supported the American College of Medical Genetics and Genomics proposed mandatory search policy in contrast with 70.8% of Section of Genetics and Birth Defects members (P<.01). Approximately 30% of both groups thought that parents should not have access to information about adult-onset conditions in their children. AAP SOB members were less likely to support testing a child for parental benefit (34.5% vs 79.7%, P<.01). There is broad consensus that parents should have the right to opt out of receiving secondary findings. There is no consensus about the ethics of justifying disclosure on the basis of parental benefit.