Potential Psychosocial Risks of Sequencing Newborns

Pediatrics. 2016 Jan;137 Suppl 1:S24-9. doi: 10.1542/peds.2015-3731F.

Abstract

Various stakeholders have issued recommendations regarding the use of genomics in pediatrics. These guidelines are driven in part by concerns about psychosocial risks of disclosing predictive genomic information during childhood. As genomic sequencing becomes more commonly used in pediatric settings, it is important to systematically study the psychosocial impact of genomic sequencing of newborns, including the impact on family dynamics. Through review of the psychological and genetic counseling literature, we identify the following 3 domains of family dynamics that have potential to be impacted by the return of genomic results during the newborn period: perceived child vulnerability, parent-child bonding, and self and partner blame. In this article, we outline the complexity of studying these psychosocial outcomes and our plan to examine them in the BabySeq Project, a randomized controlled trial in both healthy and sick infants, in which the return of genomic information will be compared with standard of care.

Publication types

  • Review

MeSH terms

  • Exome / genetics
  • Genetic Predisposition to Disease / psychology*
  • Genetic Testing*
  • Genome, Human / genetics
  • High-Throughput Nucleotide Sequencing*
  • Humans
  • Infant, Newborn
  • Neonatal Screening / psychology*
  • Parent-Child Relations
  • Parents / psychology*
  • Sequence Analysis, DNA