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. 2025 Jun 6;19(1):63.
doi: 10.1186/s40246-025-00766-1.

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

Yasir Ahmed Mohammed Elhadi  1 , Marwa Alkatheeri  2 , Maryam Alktifan  2 , Fatma Alhammadi  2 , Taif Sultan  2 , Yousef M Abu Alqumboz  2 , Ahmed Jihad  2 , M Islam Shaidul  2 , Mohammed Al Saadi  2 , Meera Saeed Nhayah Alkaabi  2 , Khalid Almaamari  2 , Khalifa Alseiari  2 , Naser Alshamsi  2 , Omar Alzaabi  2 , Saoud Al Tamimi  2 , Mohamed Salem Alameri  3 , Emad Masuadi  2 , Azhar T Rahma  4
Affiliations

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

Yasir Ahmed Mohammed Elhadi et al. Hum Genomics. .

Abstract

Background: Newborn genomic screening offers the potential for early detection and management of genetic disorders. Understanding parental perspectives is essential before integrating genomic testing into standard newborn screening.

Methods: This was a descriptive cross-sectional study surveyed 568 parents in Abu Dhabi, United Arab Emirates (UAE). An online self-administered validated and piloted questionnaire was used to gather information on demographic characteristic and perspectives regarding newborn genomic screening. Data were analysed using R version 4.4.3.

Results: Most parents (78.2%) supported integrating genomics into newborn screening programs, with 63.5% stating it requires distinct management from standard screening. Females preferred geneticists (38.2% vs. 32.5%, p < 0.001) and hospitals (45.1% vs. 39.2%, p < 0.001) for discussions, with 74.2% emphasizing explicit consent compared to 68.5% of males (p < 0.002). Treatability (82.7%), age of symptom onset (74.1%), and severity (72.2%) were key decision-making factors. Additionally, 66.7% preferred genomic testing to be covered by insurance, and 82.2% supported storing genomic data for future use.

Conclusion: Parents participated in the study strongly support genomic newborn screening. Gender-based differences emphasize the need for tailored communication and culturally sensitive strategies to inform policy development and implementation of newborn genomic screening program in the UAE and similar contexts.

Keywords: Newborn genomic screening; Parental perspectives; Public health; Testing.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: This study adhered to the ethical principles outlined in the Declaration of Helsinki. Ethical approval was granted by the Social Science Ethical Review Committee at the United Arab Emirates University. Informed written consent was obtained from all participants before data collection commenced. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Parental attitudes toward genomic screening and consent
Fig. 2
Fig. 2
Parental preferences for genomic testing by child group
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Fig. 3
Factors influencing parental decisions on newborn genomic testing
Fig. 4
Fig. 4
Parents’ perceived benefits and risks of genomic testing in newborn screening
See this image and copyright information in PMC

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