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Date of Award
Thesis - Campus Access Only
MS in Human Genetics
Laura Hercher, MS, CGC
Holly Peay, PhD, MS, CGC
Guidelines from the American Academy of Pediatrics and the American College of Medical Genetics and Genomics recommend genetic testing for individuals with Autism Spectrum Disorder (ASD) as part of their medical workup. While previous studies explored parental and caregiver experiences in the pursuit of genetic testing for the affected individual, to our knowledge, there is limited research in the usefulness of genetic testing for ASD and other neurodevelopmental disorders in terms of cascade testing, reproductive decision-making, medical management and care. In our research, a survey was submitted to parents and caregivers of N = 645 participants selected from the Simons Searchlight database. Quantitative Analysis of the 337 respondents showed an increased uptake of utility and overall satisfaction after a genetic finding, despite the challenges and concerns surrounding genetic testing and the potential implications that a genetic finding for ASD and other neurodevelopmental conditions may have. Notably, respondents overwhelmingly did not regret getting genetic testing done and found an ASD genetic finding to be helpful.
Yamane, Veronica Sue and Drori, Tzofia Nechama, "How Genetic Findings Associated with Autism are Used: A Study of Parents and Caregivers" (2021). Human Genetics Theses. 97.