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Parental Knowledge and Perceptions of Pediatric Genomic Testing for Autism Spectrum Disorders in Rural Settings

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Abstract

Although genetic testing for ASD is the standard of clinical care in the USA, the use of advanced genetic tests in children with ASD is controversial. The aim of this study was to access parental genetic knowledge, attitudes, and intention regarding advanced genetic testing for autism. Our final dataset consisted of 207 valid responses. Our final sample included 207 parents of children with ASD and most are mothers of children (88.9%). The average age of our participants is 37.8 years old. The majority of our participants are Caucasian (73.4%), followed by African Americans (13.5%), Hispanics (7.7%), Native Americans/American Indians (2.4%), and Asians (2.9%). A large number of parents (85%) reported were not aware of the advanced level of genetic testing, such as chromosomal microarray analysis (CMA) and whole-genome sequencing (WES). Most parents (84%) reported that they would take their children to undergo genetic testing. This study was a cross-sectional study using a convenience sampling technique through a variety of community outlets in Eastern North Carolina between January 2016 and May 2016. And the most significant predicators of parents’ genetic knowledge were education attainment (P < 0.05) and income (P < 0.05). Also, parents with more positive attitudes about genetic testing had higher intention to take their children to get tested than those with less positive attitudes. Our findings reflect the immediate need to educate parents with lower education/income levels about genetic testing for ASD. Educating parents about these genetic tests can help parents make more informed decisions associated with testing their children with ASD in future studies.

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Acknowledgements

We want to thank the parents of the children with ASD who participated in our study as well as the autism parents’ support groups/organizations, and public school teachers for their support for this study.

Funding

This research was supported by a grant from the Simons Foundation (SFARI [award no. 369023], [XL]).

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Authors and Affiliations

  1. Department of Health Education and Promotion, College of Health and Human Performance, East Carolina University, 300 Curry Court, Greenville, NC, 27858, USA

    Lei Xu, Alice R. Richman & Augustus E. Floyd

  2. Department of Human Development and Family Science, College of Health and Human Performance, East Carolina University, Greenville, NC, 27858, USA

    Linda C. Mitchell & Amanda L. Driggers

  3. Department of Public Health, Brody School of Medicine, East Carolina University, Greenville, NC, 27834, USA

    Huabin Luo

  4. Department of Pediatrics and Neurobiology, Duke University School of Medicine, Durham, NC, 27710, USA

    Yonghui Jiang

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  1. Lei Xu
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  2. Linda C. Mitchell
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  3. Alice R. Richman
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  4. Huabin Luo
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  5. Yonghui Jiang
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  7. Augustus E. Floyd
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Contributions

LX: designed and executed the study, analyzed the data, and wrote the paper. LCM: collaborated with the design, execution, and writing of the study. ARR: collaborated with the design and execution of the study, writing, extensive critique, and final editing of the manuscript. HBL: analyzed the data, wrote part of the results, and edited the final manuscript. YHJ: collaborated with the design and editing of the final manuscript the study. ALD and AEF: collaborated with the design and editing of the final manuscript.

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Correspondence to Lei Xu.

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The authors declare that they have no conflict of interest.

Ethics Statement

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional review board at East Carolina University (no. 15-001803).

Informed Consent

Informed consent was obtained from all individual participants included in this study.

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Xu, L., Mitchell, L.C., Richman, A.R. et al. Parental Knowledge and Perceptions of Pediatric Genomic Testing for Autism Spectrum Disorders in Rural Settings. Adv Neurodev Disord 2, 402–411 (2018). https://doi.org/10.1007/s41252-018-0069-1

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