Abstract

With the rapid growing rate of autism spectrum disorders (ASDs), prenatal genetic testing (PGT) has been offered to detect various genomic disorders, including ASD, in Taiwan. However, disparities exist in this area, as there is limited research on factors associated with PGT utilization and relevant decision-making that may guide the regulations and ethical guidelines for culturally appropriate PGT services in Taiwan. This study proposed a comprehensively integrated theoretical framework for examining the intention to undergo PGT to detect ASD susceptibility genes and subsequent abortion decision-making among Taiwanese mothers of children affected by ASD. Survey data from 333 mothers of children with ASD in 236 elementary schools with special education services in Taiwan were collected and analyzed using structural equation modeling. Approximately two-thirds of the participants (66.6%) would undergo PGT to detect ASD susceptibility genes; more than half (53.1%) would terminate the hypothetically ASD-affected pregnancy. Abortion intention was associated with age, religion, attitudes toward PGT for detecting ASD susceptibility genes, and willingness to undergo such PGT. This study explores the potential impacts of PGT on Taiwanese society, and the findings are applicable to countries heavily influenced by Chinese culture, areas with Asian immigrants, and Western countries with such PGT services and/or research available.

Highlights

  • Autism spectrum disorders (ASDs) are neurodevelopmental disorders characterized by challenges or impairments in language, communication, and social interaction [1,2]

  • We aimed to advance the study of genomic translation among underserved/under-researched populations affected by autism spectrum disorders (ASDs) and provide insights into better genomic practice related to prenatal genetic testing (PGT)

  • Our findings add to the understanding of the views regarding PGT for detecting ASD susceptibility genes within fetuses and subsequent abortion decision-making among a large sample of Taiwanese mothers of children with ASD

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Summary

Introduction

Autism spectrum disorders (ASDs) are neurodevelopmental disorders characterized by challenges or impairments in language, communication, and social interaction [1,2]. In Taiwan, ASDs are the fastest growing developmental disorder [3]. Comparing the data from the Ministry of Health and Welfare between 2005 and 2016, Taiwanese individuals with ASDs increased by 250% [4]. Such an increase is attributed to changes in the diagnostic criteria, increased awareness of ASDs in the general public, improved access to ASD-related services, and lower discrimination against families affected by ASDs [5,6]. Relatives, and rare syndromes associated with ASDs [2,7]. Suggested the critical role and contribution of genetics in the etiology of ASD. The heritability of ASD is high with estimations of 64% to 91% [8], and over 200 genes related to ASD have been identified [9]

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