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Parents' perspectives on expanded newborn genomic screening in Abu Dhabi, United Arab Emirates

Yasir Ahmed Mohammed Elhadi1, Marwa Alkatheeri2, Maryam Alktifan2

  • 1Institute of Public Health, College of Medicine and Health Sciences, United Arab Emirates University, Al An, 15551, United Arab Emirates. yelhadi@uaeu.ac.ae.

Human Genomics
|June 6, 2025
PubMed

Insights

Most parents in the UAE support newborn genomic screening, with strong preferences for explicit consent and data storage. Gender differences highlight the need for tailored communication strategies for effective implementation.

Area of Science:

  • Genetics
  • Public Health
  • Bioethics

Background:

  • Newborn genomic screening can enable early detection of genetic disorders.
  • Understanding parental views is crucial for integrating genomic testing into newborn screening.

Purpose of the Study:

  • To assess parental perspectives on integrating genomic screening into newborn screening programs in Abu Dhabi, UAE.
  • To identify factors influencing parental acceptance and preferences regarding newborn genomic screening.

Main Methods:

  • A descriptive cross-sectional study surveyed 568 parents in Abu Dhabi, UAE.
  • An online, self-administered questionnaire gathered data on demographics and views on newborn genomic screening.
  • Data were analyzed using R version 4.4.3.

Main Results:

  • 78.2% of parents supported integrating genomics into newborn screening; 63.5% felt it needs distinct management.
  • Key decision factors included treatability (82.7%), symptom onset (74.1%), and severity (72.2%).
  • Females showed preferences for geneticists and hospitals for discussions and emphasized explicit consent more than males.
  • 82.2% supported storing genomic data for future use, and 66.7% preferred insurance coverage.

Conclusions:

  • Parental support for genomic newborn screening is strong in the UAE.
  • Gender-based differences in preferences necessitate tailored communication and culturally sensitive strategies.
  • Findings can inform policy development for implementing newborn genomic screening programs in the UAE and similar regions.
Abstract

Keywords:
Newborn genomic screeningParental perspectivesPublic healthTesting

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