Autism Spectrum Disorder and Genetic Testing: Parents’ Attitudes-Data from Turkish Sample

Ayhan, Aynur Bütün; Beyazıt, Utku; Topuz, Şenay; Tunay, Çağla Zeynep; Abbas, Muhammad; Yılmaz, Serkan

doi:10.1007/s10803-020-04798-5

Cited by 10 publications

(10 citation statements)

References 36 publications

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“…Nearly three-quarters of the Taiwanese parents of children with ASD whom we interviewed held favorable views towards the use of genetic testing for their children. This finding is consistent with previous research carried out in Turkey [21], Norway [19,22], Israel [20], and the U.S. [17,18]. Specifically, the majority of the factors that we found to be associated with positive perceptions of genetic testing have also been reported by parents of children with ASD in other studies, including (1) better understanding of the causes of their child's ASD [17,[20][21][22], (2) increasing their ability to make informed family planning decisions in the future [17,18,20], (3) contributing to ASD research [17,[20][21][22], and (4) detecting ASD early and initiating interventions [17,19,21].…”

Section: Discussionsupporting

confidence: 94%

“…Nevertheless, this reasoning conveys a lack of understanding about the purpose and scope of ASD genetic testing. Findings consistent with our results were also noted in the U.S., Norway, and Turkey [ 17 , 19 , 21 ]. In fact, as children who undergo ASD genetic testing are diagnosed with ASD prior to the initiation of testing, the genetic tests themselves do not diagnose ASD.…”

Section: Discussionsupporting

confidence: 93%

“…However, while parental consent is required to have children undergo ASD genetic testing, researchers have yet to explore Taiwanese parents’ views regarding pursuing genetic testing for their children with ASD. Studies based in other nations including the United States (U.S.) [ 17 , 18 ], Norway [ 19 ], Israel [ 20 ], and Turkey [ 21 ], have explored parental perceptions of genetic testing for their children with ASD. Research has found that the majority of parents are in favor of ASD genetic testing, often citing reasons such as the utility of testing results to help explain the etiology of their child’s ASD, improve their child’s ASD-related care, advance ASD research and treatment, and make better informed future family planning decisions (for both the parents and for future generations) [ 17 , 18 , 19 , 20 , 21 , 22 ].…”

Section: Introductionmentioning

confidence: 99%

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Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation

Zhang

Kramer

Wang

et al. 2021

IJERPH

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Background: The diagnosis of autism spectrum disorder (ASD) cases is increasing in Taiwan. Genetic testing for children with ASD offers several potential benefits and is available with out-of-pocket expenses. Parents play a pivotal role in having their children with ASD tested; therefore, understanding their perceptions of, and perceived barriers to genetic testing is vital. Methods: Semi-structured interviews were conducted with 39 parents of children with ASD in Taiwan. Interviews were recorded and transcribed verbatim. NVivo 12 software (QSR International, Doncaster, Australia) was used to facilitate an inductive coding methodology. Results: The majority of participants (74.4%) supported ASD genetic testing for their children with ASD, citing reasons such as clarifying ASD etiology, well-informed family planning, contributing to ASD research, and early ASD detection and intervention. Others indicated that they were either against such testing (17.9%), or unsure (7.7%) about whether to take their children with ASD for genetic testing. Those who were opposed reported that their main concerns related to perceptions of no value of genetic testing, potential for family conflict, and financial difficulties. Conclusions: Most of the parents of children with ASD that we interviewed expressed favorable views of ASD genetic testing. There exists a need to increase parental access to education and counseling, and to include testing coverage in Taiwanese national health insurance.

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Section: Discussionsupporting

confidence: 94%

Section: Discussionsupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

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Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation

Zhang

Kramer

Wang

et al. 2021

IJERPH

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“…Research has shown that parents’ intention to pursue genetic testing for their children is significantly associated with their knowledge of ASD genetic testing and their attitudes toward ASD genetic testing [ 27 ]. However, previous studies conducted in the United States and Europe have demonstrated that although parents of children with ASD generally hold favorable attitudes toward genetic testing for ASD, they have deficient knowledge and awareness of such testing [ 27 , 28 , 29 , 30 , 31 ]. Furthermore, many parents of children with ASD may have unrealistic expectations, misperceptions, or misinformation regarding genetic testing for ASD [ 32 , 33 ].…”

Section: Introductionmentioning

confidence: 99%

Knowledge and Attitudes toward Genetic Testing for Autism Spectrum Disorders among Parents of Affected Children in Taiwan

Zhao

Chen

et al. 2022

Genes

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The prevalence of autism spectrum disorders (ASD) in Taiwan has been increasing, and genetic testing for ASD has been available and provided to parents of children diagnosed with ASD in Taiwan. However, there is still limited understanding of Taiwanese parents’ knowledge of and attitudes toward such testing. Therefore, the present study addressed this gap by assessing the attitudes toward as well as actual and perceived knowledge of ASD genetic testing among Taiwanese parents of children diagnosed with ASD. A sample of 443 parents of children with ASD recruited from 236 public schools in Taiwan completed a paper-and-pencil survey. Although parents generally held favorable attitudes toward ASD genetic testing, they had deficient knowledge of such test (with only a 31.4% average correct rate on the actual knowledge scale). Tailored health education materials should be developed to improve the knowledge of ASD genetic testing among parents with affected children in Taiwan.

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“…In a large Turkish sample, 87% of parents stated that they would pursue genetic testing if it could help identify the cause of their child’s ASD, and 84% believed that genetic testing referral is a key step in the diagnostic process ( Ayhan et al, 2020 ). However, despite interest in and clinical recommendations for genetic testing, only about 22–28% of families undergo genetic testing in the US ( Amiet et al, 2014 ; Zhao et al, 2019 ).…”

Section: Introductionmentioning

confidence: 99%

Mini-Review: Genetic Literacy and Engagement With Genetic Testing for Autism Spectrum Disorder

Little

Gunter

2021

Front. Genet.

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As genomic and personalized medicine is integrated into healthcare, the need for patients to understand and make decisions about their own genetic makeup increases. Genetic literacy, or one’s knowledge of genetic principles and their applications, measures an individual’s ability to apply genetic information to their own treatment. Increased genetic literacy can improve comprehension of genetic tests and therefore increase participation in testing to detect and treat genetic disorders. It can also help providers understand and explain genetic information to their patients. However, current research indicates that the population’s genetic literacy is generally low. Because many medical students, providers, and patients cannot adequately apply genetic information to their health, new and beneficial genetic technologies can be underused. More specifically, though genetic testing is recommended at the time of diagnosis for those affected by autism spectrum disorder (ASD), as few as 22% of families undergo genetic testing after diagnosis. While ASD, a neurodevelopmental condition characterized by impaired social communication and restricted interests, has both genetic and environmental risk, genetic testing can give clinicians useful information and help families avoid potentially painful and costly tests, even when many families do not receive a “positive” genetic result through microarrays or gene panels. Improving genetic literacy in populations affected by ASD can also improve attitudes toward genetic testing, thereby ensuring access to genetic health risk information. In this mini review, we discuss the current literature describing genetic literacy and genetic testing rates for ASD.

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Autism Spectrum Disorder and Genetic Testing: Parents’ Attitudes-Data from Turkish Sample

Cited by 10 publications

References 36 publications

Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation

Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation

Knowledge and Attitudes toward Genetic Testing for Autism Spectrum Disorders among Parents of Affected Children in Taiwan

Mini-Review: Genetic Literacy and Engagement With Genetic Testing for Autism Spectrum Disorder

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