Parental Views on Newborn Next Generation Sequencing: Implications for Decision Support

Rebecca R. Moultrie*, Ryan Paquin, Christine Rini, Myra I. Roche, Jonathan S. Berg, Cynthia M. Powell, Megan A. Lewis

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: This study aimed to understand parental decisions, perspectives, values, and beliefs on next generation sequencing in the newborn period (NGS-NBS) to inform the development of a decision aid to support parental decision making in the North Carolina Newborn Exome Sequencing for Universal Screening study. Methods: We conducted dyadic interviews with 66 current or expectant parents (33 couples) to understand overall decisions about NGS-NBS and reasons for and against learning NGS-NBS results differing by age of onset and medical actionability. Audio recordings were transcribed, coded, and analyzed using qualitative framework analyses. Results: Favorable views of NGS-NBS included benefits of early intervention, preparedness, child autonomy, and altruism. Unfavorable views were the potential negative effects from early intervention, psychosocial harm, and religious beliefs. Parents universally reported quality of life as important. Conclusion: Interviews elucidated what is important in deciding to have NGS-NBS. Understanding parental perspectives, values, and beliefs and integrating evidence-based findings into a parent-centric decision aid provides value and support in making decisions related to NGS-NBS, where there is no clear course of action.

Original languageEnglish (US)
Pages (from-to)856-864
Number of pages9
JournalMaternal and child health journal
Volume24
Issue number7
DOIs
StatePublished - Jul 1 2020

Keywords

  • Decision support
  • Newborns
  • Next generation sequencing
  • Parental views

ASJC Scopus subject areas

  • Epidemiology
  • Pediatrics, Perinatology, and Child Health
  • Obstetrics and Gynecology
  • Public Health, Environmental and Occupational Health

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