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Overview
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  11. Preferences Of Parents From Diverse Backgrounds On Genomic Screening Of Apparently Healthy Newborns

Preferences of parents from diverse backgrounds on genomic screening of apparently healthy newborns

Nina B Gold1,2, Jacklyn O Omorodion2,3, Maya C Del Rosario3,4

  • 1Division of Medical Genetics and Metabolism, Massachusetts General Hospital for Children, Boston, Massachusetts, USA.

Journal of Genetic Counseling
|October 28, 2024

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View abstract on PubMed

Summary
This summary is machine-generated.

Genomic newborn screening offers health benefits, but parents desire clear communication on risks and robust support systems. Diverse parental perspectives are crucial for equitable implementation of expanded newborn screening programs.

Area of Science:

  • Genomics
  • Public Health
  • Pediatrics

Background:

  • Genomic sequencing is a potential expansion for newborn screening.
  • Diverse parental perspectives are essential for equitable implementation.

Purpose of the Study:

  • To assess parental perspectives on genomic newborn screening.
  • To understand preferences for screened disorders, data privacy, and post-screening support.

Main Methods:

  • Conducted 20 semi-structured interviews and 7 focus groups with diverse parents.
  • Interviews and focus groups were conducted in English and Spanish.

Main Results:

  • Parents see potential health and personal benefits in genomic newborn screening.
  • Key themes include interest in family health risks, emotional preparation, understanding uncertain results, data privacy concerns, and need for post-screening support.
Keywords:
diversitygenome sequencingnewborn screeningpublic health

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Conclusions:

  • Parental expectations and concerns should inform policy for genomic newborn screening.
  • Prioritizing parental preferences is vital before large-scale implementation of genomic newborn screening.
underrepresented populations