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

被引:0
作者
Elhadi, Yasir Ahmed Mohammed [1 ]
Alkatheeri, Marwa [1 ]
Alktifan, Maryam [1 ]
Alhammadi, Fatma [1 ]
Sultan, Taif [1 ]
Abu Alqumboz, Yousef M. [1 ]
Jihad, Ahmed [1 ]
Shaidul, M. Islam [1 ]
Al Saadi, Mohammed [1 ]
Alkaabi, Meera Saeed Nhayah [1 ]
Almaamari, Khalid [1 ]
Alseiari, Khalifa [1 ]
Alshamsi, Naser [1 ]
Alzaabi, Omar [1 ]
Al Tamimi, Saoud [1 ]
Alameri, Mohamed Salem [2 ]
Masuadi, Emad [1 ]
Rahma, Azhar T. [1 ]
机构
[1] United Arab Emirates Univ, Inst Publ Hlth, Coll Med & Hlth Sci, Al An 15551, U Arab Emirates
[2] Dept Hlth, Abu Dhabi 20224, U Arab Emirates
关键词
Newborn genomic screening; Parental perspectives; Public health; Testing; EXPERIENCES; IMPACT;
D O I
10.1186/s40246-025-00766-1
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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.
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页数:10
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