TY - JOUR
T1 - Parents’ perspectives on expanded newborn genomic screening in Abu Dhabi, United Arab Emirates
AU - Elhadi, Yasir Ahmed Mohammed
AU - Alkatheeri, Marwa
AU - Alktifan, Maryam
AU - Alhammadi, Fatma
AU - Sultan, Taif
AU - Alqumboz, Yousef M.Abu
AU - Jihad, Ahmed
AU - Shaidul, M. Islam
AU - Al Saadi, Mohammed
AU - Alkaabi, Meera Saeed Nhayah
AU - Almaamari, Khalid
AU - Alseiari, Khalifa
AU - Alshamsi, Naser
AU - Alzaabi, Omar
AU - Al Tamimi, Saoud
AU - Alameri, Mohamed Salem
AU - Masuadi, Emad
AU - Rahma, Azhar T.
N1 - Publisher Copyright:
© The Author(s) 2025.
PY - 2025/12
Y1 - 2025/12
N2 - 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.
AB - 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.
KW - Newborn genomic screening
KW - Parental perspectives
KW - Public health
KW - Testing
UR - https://www.scopus.com/pages/publications/105007470478
UR - https://www.scopus.com/pages/publications/105007470478#tab=citedBy
U2 - 10.1186/s40246-025-00766-1
DO - 10.1186/s40246-025-00766-1
M3 - Article
C2 - 40481610
AN - SCOPUS:105007470478
SN - 1473-9542
VL - 19
JO - Human Genomics
JF - Human Genomics
IS - 1
M1 - 63
ER -