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

Title

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

Creator

Knapp B; Decker C; Lantos J D

Publisher

Pediatrics

Date

2019

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2019 List

Collection

Citation

Knapp B; Decker C; Lantos J D, “Neonatologists' Attitudes About Diagnostic Whole-Genome Sequencing in the NICU,” Pediatric Palliative Care Library, accessed August 5, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16113.

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