Title

Neonatologists' Attitudes About Diagnostic Whole-Genome Sequencing in the NICU.

Document Type

Article

Publication Date

1-2019

Identifier

DOI: 10.1542/peds.2018-1099J

Abstract

Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became available, and another focus group took place 3 years later. Focus groups were audiotaped, transcribed, and analyzed by using standard techniques of grounded theory. Different analysts coded them for themes. The analysts then discussed differences and agreed on major themes. Twelve doctors participated in the first focus group, and 9 doctors participated in the second; 62% were attending physicians, and the rest were fellows. There were 14 women and 7 men. We did not collect any other demographic information on participants. Surprisingly, we found few differences between the earlier focus group and the later one. Comments were categorized as falling into 4 domains: (1) uncertainty about the interpretation of results, (2) issues about parental consent and limits on their right to know genomic information, (3) different opinions about whether and how genomic results could be clinically useful, and (4) potential harms of genomic testing.

Journal Title

Pediatrics

Volume

143

Issue

Suppl 1

First Page

54

Last Page

57

MeSH Keywords

Attitude of Health Personnel; Clinical Decision-Making; Fellowships and Scholarships; Female; Focus Groups; Humans; Infant, Newborn; Intensive Care Units, Neonatal; Male; Neonatal Screening; Neonatologists; Parental Consent; Time Factors; Truth Disclosure; Uncertainty; Whole Genome Sequencing

Keywords

Attitude of Health Personnel; Clinical Decision-Making; Fellowships and Scholarships; Female; Focus Groups; Humans; Infant, Newborn; Intensive Care Units, Neonatal; Male; Neonatal Screening; Neonatologists; Parental Consent; Time Factors; Truth Disclosure; Uncertainty; Whole Genome Sequencing

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