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

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.

journal_name

Pediatrics

journal_title

Pediatrics

authors

Holm IA,McGuire A,Pereira S,Rehm H,Green RC,Beggs AH,BabySeq Project Team.

doi

10.1542/peds.2018-1099H

subject

Has Abstract

pub_date

2019-01-01 00:00:00

pages

S37-S43

issue

Suppl 1

eissn

0031-4005

issn

1098-4275

pii

peds.2018-1099H

journal_volume

143

pub_type

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