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Background <p>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.</p> Methods <p>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.</p> Results <p>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%, <i>p</i> &lt; 0.001) and hospitals (45.1% vs. 39.2%, <i>p</i> &lt; 0.001) for discussions, with 74.2% emphasizing explicit consent compared to 68.5% of males (<i>p</i> &lt; 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.</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年6月6日

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

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.