Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review.
Katerina Dounavi, Meral Koldas
PMID 38353915WHAT IT FOUND
Parents generally view genetic testing for autism positively, citing benefits like early intervention and understanding causes.
However, the most common barriers were lack of provider recommendation and high cost, leaving many families unaware of testing options.
Key findings
01Most studies reported mixed parental attitudes toward genetic testing, with no studies classifying attitudes as purely negative.
02The primary barriers to accessing genetic testing were the cost of the tests and a lack of recommendation or information from health providers.
03Parents identified benefits including gaining knowledge about autism, understanding the cause, and facilitating access to early intervention and medical treatment.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The review is heavily biased toward US-based, White, female, high-socioeconomic-status participants, limiting its generalizability to diverse cultural and socioeconomic groups. There was significant variability in the quality and design of the included studies, with most being quantitative surveys rather than in-depth qualitative interviews. The classification of parental attitudes as 'positive' or 'mixed' relied on arbitrary percentage thresholds (75% and 25%) set by the authors. The review included studies on children diagnosed with various developmental delays, not just confirmed autism, which may affect the applicability of findings to specific ASD populations.
The easy way to misread this
Do not assume that parents are refusing genetic testing due to negative attitudes. The review found no studies where parental attitudes were classified as negative; instead, the primary obstacles were external factors like cost and a lack of recommendation from healthcare providers.