Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders.
Taiwanese parents want genetic-testing facts before they decide—hand them a simple sheet on accuracy, cause, and treatment value.
01Research in Context
What this study did
Chen et al. (2019) asked Taiwanese parents of children with autism what they know about genetic testing. They used a simple survey. Most parents had never heard of genetic testing for autism before.
What they found
Two-thirds of parents did not know genetic testing exists. Still, almost all wanted clear facts before saying yes. Top questions were: How accurate is the test? Will it explain why my child has autism? Could it guide treatment?
How this fits with other research
Tait et al. (2016) found Hong Kong families also feel lost during the autism journey. Both studies show Chinese-speaking parents want more information, not less.
Liu et al. (2016) and Xia et al. (2020) keep finding new autism-linked genes in East Asian samples. Yet Lei-Shih shows parents on the same island have never heard of these tests. The science is moving fast; families are being left behind.
Rivera-Figueroa et al. (2025) reports that Asian parents in the U.S. often skip services because of stigma. Lei-Shih adds a second barrier: not knowing what genetic tests even do. Together they warn that silence about genetics can feed fear and delay help.
Why it matters
You may be the first person to mention genetic testing to a family. Start with the three questions parents asked for most: accuracy, cause, and treatment links. Use plain words and give written handouts in the family's language. A five-minute explanation can replace months of worry.
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02At a glance
03Original abstract
We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals' priorities should be in line with the preferred topics identified in this study.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361318778903