"Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD. - PubMed - NCBI

"Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD. - PubMed - NCBI

J Autism Dev Disord. 2017 Feb 22. doi: 10.1007/s10803-017-3067-7. [Epub ahead of print]

"Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.

Reiff M1,2, Bugos E3,4, Giarelli E5, Bernhardt BA6, Spinner NB7, Sankar PL8, Mulchandani S7.

Author information

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.

KEYWORDS:

Autism spectrum disorders; Causation beliefs; Chromosomal microarray analysis; Genetic determinism; Genomic testing; Parental expectations

PMID:

 

28229350

 

DOI:

 

10.1007/s10803-017-3067-7

[PubMed - as supplied by publisher]

https://phgkb.cdc.gov/GAPPKB/phgHome.do




Last Posted: Mar 03, 2017

---

• "Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.  
  Reiff Marian et al. Journal of autism and developmental disorders 2017 Feb
• Genetic Testing for Autism Spectrum Disorder is Lacking Evidence of Cost-Effectiveness. A Systematic Review.  
  Ziegler Andreas et al. Methods of information in medicine 2017 Feb
• Targeted sequencing identifies 91 neurodevelopmental-disorder risk genes with autism and developmental-disability biases  
  Nature, HAF Stessman et al, February 13, 2017
• Clinical Utility of a Comprehensive, Whole Genome CMA Testing Platform in Pediatrics: A Prospective Randomized Controlled Trial of Simulated Patients in Physician Practices.  
  Peabody John et al. PloS one 2016 11(12) e0169064
• Genetic testing among Spanish pediatric neurologists: Knowledge, attitudes and practices.  
  Domínguez-Carral J et al. European journal of medical genetics 2016 Nov
• Autism genetics - an overview.  
  Yin Jiani et al. Prenatal diagnosis 2016 Oct
• Autism study finds early intervention has lasting effects  
  H Ledford, Nature News, October 25, 2016
• If genetic variation could talk: What genomic data may teach us about the importance of gene expression regulation in the genetics of autism.  
  Yeh Erika et al. Molecular and cellular probes 2016 Oct
• In Search of Autism's Roots.  
  Gross Liza et al. PLoS biology 2016 Sep (9) e2000958
• Chromosomal microarray testing in adults with intellectual disability presenting with comorbid psychiatric disorders.  
  Wolfe Kate et al. European journal of human genetics : EJHG 2016 Sep
• DNA methylation signature of human fetal alcohol spectrum disorder.  
  Portales-Casamar Elodie et al. Epigenetics & chromatin 2016 925
• Autism severity linked to genetics, ultrasound, data analysis finds  
  Science Daily, September 1, 2016
• Genome-wide, integrative analysis implicates microRNA dysregulation in autism spectrum disorder  
  YE WU et al, Nature Neurosci, August 2016
• Genetic testing and counseling in the case of an autism diagnosis: A caregivers perspective.  
  Hens Kristien et al. European journal of medical genetics 2016 Aug
• A sneak peek at personalized medicine in autism?  
  LF Kung, Science Translational Medicine, July 27, 2016
• Utilization of genetic testing among children with developmental disabilities in the United States.  
  Kiely Bridget et al. The application of clinical genetics 2016 993-100

more