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Returning a Genomic Result for an Adult-Onset Condition to the Parents of a Newborn: Insights From the BabySeq Project

Year: 2019
Type: article
Abstract: The return of information from genomic sequencing in children, especially in early life, brings up complex issues around parental autonomy, the child's future autonomy, the best interest standard, and the best interests of the family. These issues are particularly important in considering the return of genomic results for adult-onset-only conditions in children. The BabySeq Project is a randomized trial used to explore the medical, behavioral, and economic impacts of integrating genomic sequencing into the care of newborns who are healthy or sick. We discuss a case in which a variant in a gene for an actionable, adult-onset-only condition was detected, highlighting the ethical issues surrounding the return of such finding in a newborn to the newborn's parents.
Source: PEDIATRICS
DOI: 10.1542/peds.2018-1099h
Authors: Ingrid A. Holm, Amy McGuire, Stacey Pereira, Heidi Rehm, Robert C. Green, Alan H. Beggs, and the BabySeq Project Team
Institutions: Boston Children's Hospital, Manton Center for Orphan Disease Research, Baylor College of Medicine, Broad Institute, Brigham and Women's Hospital, Harvard University, Massachusetts Institute of Technology
Language: English
Field: Medicine
Open Access status: green
OpenAlex ID: W2907453142
FWCI: 9.098
Cites: 32
Cited by: 63
Related to: 10