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

• Published in: The Journal of pediatrics Vol. 262; p. 113612
• Main Authors: Smith, Hadley Stevens, Bonkowski, Emily, Hickingbotham, Madison, Pereira, Stacey, May, Thomas, Guerrini, Christi
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-11-2023
• Subjects: Child; Foster Home Care; Genomics; Humans; Parents; genomic sequencing; adoption; law; ethics; ELSI; foster care
• ISSN: 0022-3476; 1097-6833; 1097-6833
• DOI: 10.1016/j.jpeds.2023.113612

There are approximately 400,000 children in foster care in the US, about half of whom have chronic health problems and about 10% of whom have complex health care 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 which highlight legal, ethical, and policy issues surrounding genomic sequencing for children in foster care using three 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.