Potential Psychosocial Risks of Sequencing Newborns

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...

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Bibliographic Details
Published in:Pediatrics (Evanston) 2016-01, Vol.137 Suppl 1 (Supplement_1), p.S24-S29
Main Authors: Frankel, Leslie Ann, Pereira, Stacey, McGuire, Amy L
Format: Article
Language:English
Subjects:
Company business management
Exome - genetics
Genetic Predisposition to Disease - psychology
Genetic Testing
Genome, Human - genetics
Genomics
Health aspects
High-Throughput Nucleotide Sequencing
Humans
Infant, Newborn
Infants
Management
Mental disorders
Mental illness
Neonatal Screening - psychology
Newborn babies
Parent-Child Relations
Parents - psychology
Pediatrics
Risk assessment
Risk factors
Sequence Analysis, DNA
Social psychology
Supplement
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Summary: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.
ISSN:0031-4005
1098-4275
DOI:10.1542/peds.2015-3731F