Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project.

ABSTRACT:

Background and objectives

There is interest in applying genomic sequencing (GS) to newborns' clinical care. Here we explore parents' and clinicians' attitudes toward and perceptions of the risks, benefits, and utility of newborn GS compared with newborn screening (NBS) prior to receiving study results.

Methods

The BabySeq Project is a randomized controlled trial used to explore the impact of integrating GS into the clinical care of newborns. Parents (n = 493) of enrolled infants (n = 309) and clinicians (n = 144) completed a baseline survey at enrollment. We examined between-group differences in perceived utility and attitudes toward NBS and GS. Open-ended responses about risks and benefits of each technology were categorized by theme.

Results

The

SUBMITTER: Pereira S 

PROVIDER: S-EPMC6480393 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature