Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naive.

ABSTRACT:

Purpose

In 2014, our institution launched a randomized controlled trial (RCT) comparing rapid genome sequencing (GS) to standard clinical evaluations of infants with suspected genetic disorders. This study aimed to understand parental response to the use of GS for their newborn babies.

Methods

Twenty-three of 128 parents whose infant had enrolled in the RCT completed a retrospective survey and interview addressing attitudes about GS and responses to receiving diagnostic information. We also collected information about participants' genetic literacy, genetic knowledge, numeracy, and symptoms of anxiety and depression.

Results

The majority reported positive (13; 56.5%) or neutral 4 (4; 17.4%) feelings when approached about GS for their infant and 100% felt that GS was g

SUBMITTER: Berrios C 

PROVIDER: S-EPMC7004847 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature