Parents' Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit.

ABSTRACT:

Background

It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents' experiences with GS as a first-line diagnostic tool for infants with suspected genetic conditions in the NICU.

Methods

Parents of newborns (N = 62) suspected of having a genetic condition were recruited across five hospitals in the southeast United States as part of the SouthSeq study. Semi-structured interviews (N = 78) were conducted after parents received their child's sequencing result (positive, negative, or variants of unknown significance). Thematic analysis was performed on all interviews.

Results

Key themes included that (1) GS in infancy is important for reproductive decision making, prepar

SUBMITTER: Lemke AA 

PROVIDER: S-EPMC10382030 | biostudies-literature | 2023 Jun

REPOSITORIES: biostudies-literature