Title |
“Set in Stone” or “Ray of Hope”: Parents’ Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD
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Published in |
Journal of Autism and Developmental Disorders, February 2017
|
DOI | 10.1007/s10803-017-3067-7 |
Pubmed ID | |
Authors |
Marian Reiff, Eva Bugos, Ellen Giarelli, Barbara A. Bernhardt, Nancy B. Spinner, Pamela L. Sankar, Surabhi Mulchandani |
Abstract |
Despite increasing utilization of chromosomal microarray analysis (CMA) for autism spectrum disorders (ASD), limited information exists about how results influence parents' beliefs about etiology and prognosis. We conducted in-depth interviews and surveys with 57 parents of children with ASD who received CMA results categorized as pathogenic, negative or variant of uncertain significance. Parents tended to incorporate their child's CMA results within their existing beliefs about the etiology of ASD, regardless of CMA result. However, parents' expectations for the future tended to differ depending on results; those who received genetic confirmation for their children's ASD expressed a sense of concreteness, acceptance and permanence of the condition. Some parents expressed hope for future biomedical treatments as a result of genetic research. |
X Demographics
Geographical breakdown
Country | Count | As % |
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Ireland | 1 | 50% |
Canada | 1 | 50% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 1 | 50% |
Scientists | 1 | 50% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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Unknown | 96 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
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Student > Master | 16 | 17% |
Student > Ph. D. Student | 14 | 15% |
Student > Bachelor | 9 | 9% |
Student > Doctoral Student | 7 | 7% |
Other | 5 | 5% |
Other | 16 | 17% |
Unknown | 29 | 30% |
Readers by discipline | Count | As % |
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Psychology | 32 | 33% |
Medicine and Dentistry | 10 | 10% |
Nursing and Health Professions | 9 | 9% |
Biochemistry, Genetics and Molecular Biology | 5 | 5% |
Agricultural and Biological Sciences | 2 | 2% |
Other | 7 | 7% |
Unknown | 31 | 32% |