Clinically Indicated Genomic Sequencing of Children in Foster Care: Legal and Ethical Issues

Authors

Hadley Stevens Smith
Emily S Bonkowski
Madison R Hickingbotham
Stacey Pereira
Thomas May
Christi J Guerrini

Publication Date

11-1-2023

Journal

The Journal of Pediatrics

DOI

10.1016/j.jpeds.2023.113612

PMID

37468037

PMCID

PMC10792112

PubMedCentral® Posted Date

11-1-2024

PubMedCentral® Full Text Version

Author MSS

Published Open-Access

yes

Keywords

Child, Humans, Parents, Foster Home Care, Genomics

Abstract

There are approximately 400 000 children in foster care in the US, approximately one-half of whom have chronic health problems and approximately 10% of whom have complex healthcare needs. Given the increasing relevance of genomic sequencing to guide clinical care for children with rare, chronic, and undiagnosed conditions, it may be an important component of diagnostic evaluation for children in foster care. Clinically indicated genomic sequencing may provide information that has health implications for children in foster care, as well as for their biological parents and other relatives. Whether and how genomic sequencing results impact legal decision making and family court outcomes is not yet well-understood. We describe scenarios that highlight legal, ethical, and policy issues surrounding genomic sequencing for children in foster care using 3 cases adapted from real-world events. Together, these cases highlight important yet underexplored issues that arise when genomic information has legal relevance in family court and ethical implications for child and family well-being. As genomic sequencing becomes more routine for the general pediatric population, additional research is needed to better understand its impacts on children and other stakeholders within the foster care system.