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Autism spectrum disorder and genetic testing: Parental perceptions and decision-making
Alyson E Hanish1, Marlene Z Cohen1, Lois J Starr2
1College of Nursing, University of Nebraska Medical Center, Omaha, USA.
Journal for Specialists in Pediatric Nursing : JSPN
|February 24, 2018
Summary
Parents of children with autism spectrum disorder (ASD) often have limited knowledge of genetic testing. Most parents believe genetic testing offers benefits for their child, reproductive choices, and future generations.
Area of Science:
- Genetics
- Pediatrics
- Developmental Neuroscience
Background:
- Genetic testing is crucial for diagnosing autism spectrum disorder (ASD) in children.
- Chromosomal microarray analysis (CMA) is a recommended first-tier diagnostic test for ASD.
- Accurate genetic diagnoses can inform medical management, therapies, and recurrence risks.
Purpose of the Study:
- To explore parents' decision-making processes regarding genetic testing for their children with ASD.
- To understand parental perspectives and experiences with genetic testing for ASD.
Main Methods:
- Semistructured interviews were conducted with 20 parents of children with ASD.
- Qualitative content analysis was used to analyze interview data.
Main Results:
- Parents reported limited understanding of genetic testing before genetics clinic visits.
- Most parents perceived genetic testing as beneficial for their child, reproductive decisions, and future generations.
Conclusions:
- Educational strategies are needed for healthcare providers and families to improve parental decision-making about genetic testing for ASD.
- Enhanced understanding can support informed choices regarding genetic testing in pediatric ASD.
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