ArticleJournal of autism and developmental disorders2025
Delivered Right to Your Own Home: Community Perspectives on Home-Based Kits for Studying Genetic and Environmental Factors Related to Later Autism Diagnosis.
Article in Journal of autism and developmental disorders, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
6 authors.
Funding
Abstract
purposeAutism Spectrum Disorder (autism) has a complex and multifaceted causal pathway involving both biological and environmental variables. Despite growing interest in early identification, opportunities to collect and integrate diverse presymptomatic data remain limited. This study aimed to inform the design of an at-home assessment kit for collecting genetic and environmental data related to later autism diagnosis by interviewing interestholders about the acceptability and feasibility of such a kit.
methodSemi-structured interviews were conducted with 22 mothers or future mothers of children from groups associated with varying genetic and environmental factors related to later autism diagnosis. Interview transcripts were analyzed using thematic analysis, including second cycle and axial coding.
resultsSeven primary themes emerged from the analysis: (a) willingness; (b) concerns; (c) supports; (d) research participation; (e) goals of research; and (f) impediments to research engagement. Participants expressed general willingness to collect samples at home, especially when research goals were aligned with their own values. Subthemes highlighted key considerations such as the importance of child consent, potential burden of collection, and adherence to ethical research standards.
conclusionInterestholders are open to participating in at-home data collection of genetic and environmental markers associated with future autism diagnosis, provided the procedures are ethical and practical. These findings offer critical guidance for designing accessible and acceptable home-based tools for presymptomatic data collection of biological and environmental variables related to future autism diagnosis.
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