Pregnant Latinas’ views of adopting exome sequencing into newborn screening: A qualitative study

Abstract

PurposeThere are, currently, conflicting opinions about the adoption of exome sequencing (ES) into the standard newborn screening program. This study aimed to explore the views of pregnant Latinas, a hard-to-reach, underserved, and understudied population, about pursuing ES for their newborns. MethodsWe conducted semistructured interviews with 32 pregnant Latinas who predominately lived in rural areas and had low levels of income and education. An emergent coding approach was used to analyze the qualitative data collected. ResultsOur entire sample believed that ES should be offered as a part of newborn screening, which could empower pregnant Latinas to better understand their children’s health and take early treatment actions. Although some participants were concerned about potentially bad ES results and had questions about the accuracy of ES results, nearly all interviewees reported that they would be willing to have their newborns undergo ES. The main reasons given were to be informed of diseases that the baby may have, and the perception that ES is a procedure that involves minimal risk. ConclusionPregnant Latinas in this study had favorable attitudes toward newborn ES. Their perspectives should be considered when decisions are made about incorporating ES into newborn screening.