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
Pediatricsjournal_title
Pediatricsauthors
Holm IA,McGuire A,Pereira S,Rehm H,Green RC,Beggs AH,BabySeq Project Team.doi
10.1542/peds.2018-1099Hsubject
Has Abstractpub_date
2019-01-01 00:00:00pages
S37-S43issue
Suppl 1eissn
0031-4005issn
1098-4275pii
peds.2018-1099Hjournal_volume
143pub_type
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