Parental Views on Newborn Next Generation Sequencing: Implications for Decision Support.
Matern Child Health J
; 24(7): 856-864, 2020 Jul.
Article
en En
| MEDLINE
| ID: mdl-32424581
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.Palabras clave
Texto completo:
1
Base de datos:
MEDLINE
Asunto principal:
Padres
/
Técnicas de Apoyo para la Decisión
/
Tamizaje Neonatal
/
Secuenciación de Nucleótidos de Alto Rendimiento
Límite:
Adult
/
Female
/
Humans
/
Newborn
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Matern Child Health J
Asunto de la revista:
PERINATOLOGIA
Año:
2020
Tipo del documento:
Article
País de afiliación:
Estados Unidos