Attitudes Toward Pediatric Whole Genome Sequencing Among Young Adults

Introduction: Advances in whole genome sequencing (WGS) have inspired debate over the appropriateness of preventive WGS interventions that target pediatric populations. This could occur through the supplementation of existing newborn screening programs, meaning that children may grow up with knowledge of a range of individualized genetic risks. Given that they have recently experienced adolescence, the objective of this study is to characterize the attitudes of young adults towards WGS.

Methods: A mixed methods cross-sectional study was conducted with 18 and 19-year-old undergraduates at a diverse Pacific Northwest university.  Participants watched a video explaining the implications of WGS for health and then completed an online survey.  Questions assessed individual attitudes toward receiving WGS and perspectives on hypothetical pediatric WGS scenarios.  Content analysis, bivariate correlations, and regression techniques were used to analyze the data.

Results: A total of 145 young adults participated (response rate: >47%).  Quantitative and qualitative results indicated that participants had strong positive attitudes toward obtaining WGS.  They expressed a desire to choose what genomic risk information they would learn, and the majority wanted testing for all options among a selection of 17 health conditions.  Generally, participants believed that WGS results should be communicated to children between the ages of 14 and 18-years-old, although the preferred age varied by the type of genetic information. 

Discussion: The results suggest that individuals who have recently experienced adolescence display substantial support for pediatric WGS.  Future interventions should consider how to accommodate their interest and desire for choice about what information they receive.