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

Autor: Smith HS; Department of Population Medicine, Precision Medicine Translational Research (PROMoTeR) Center, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA. Electronic address: hadley.smith@hphci.harvard.edu., Bonkowski ES; St. Jude Children's Research Hospital, Memphis, TN; University of Washington Institute for Public Health Genetics, Seattle, WA., Hickingbotham MR; Department of Population Medicine, Precision Medicine Translational Research (PROMoTeR) Center, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA., Pereira S; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX., May T; Department of Medical Education and Clinical Sciences, Washington State University, Pullman, WA., Guerrini CJ; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Jazyk: angličtina
Zdroj: The Journal of pediatrics [J Pediatr] 2023 Nov; Vol. 262, pp. 113612. Date of Electronic Publication: 2023 Jul 17.
DOI: 10.1016/j.jpeds.2023.113612
Abstrakt: 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.
Competing Interests: Declaration of Competing Interest The authors declare no Conflicts of interest. H.S.S. is supported by a grant from the National Human Genome Research Institute (K99HG011491). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
(Copyright © 2023 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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