Literature DB >> 28229350

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

Marian Reiff1,2, Eva Bugos3,4, Ellen Giarelli5, Barbara A Bernhardt6, Nancy B Spinner7, Pamela L Sankar8, Surabhi Mulchandani7.   

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.

Entities:  

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

Mesh:

Year:  2017        PMID: 28229350     DOI: 10.1007/s10803-017-3067-7

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  54 in total

1.  What's at stake? Genetic information from the perspective of people with epilepsy and their family members.

Authors:  Sara Shostak; Dana Zarhin; Ruth Ottman
Journal:  Soc Sci Med       Date:  2011-07-23       Impact factor: 4.634

2.  Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.

Authors:  Marian Reiff; Ellen Giarelli; Barbara A Bernhardt; Ebony Easley; Nancy B Spinner; Pamela L Sankar; Surabhi Mulchandani
Journal:  J Autism Dev Disord       Date:  2015-10

Review 3.  Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies.

Authors:  David T Miller; Margaret P Adam; Swaroop Aradhya; Leslie G Biesecker; Arthur R Brothman; Nigel P Carter; Deanna M Church; John A Crolla; Evan E Eichler; Charles J Epstein; W Andrew Faucett; Lars Feuk; Jan M Friedman; Ada Hamosh; Laird Jackson; Erin B Kaminsky; Klaas Kok; Ian D Krantz; Robert M Kuhn; Charles Lee; James M Ostell; Carla Rosenberg; Stephen W Scherer; Nancy B Spinner; Dimitri J Stavropoulos; James H Tepperberg; Erik C Thorland; Joris R Vermeesch; Darrel J Waggoner; Michael S Watson; Christa Lese Martin; David H Ledbetter
Journal:  Am J Hum Genet       Date:  2010-05-14       Impact factor: 11.025

Review 4.  Autism: a review of the state of the science for pediatric primary health care clinicians.

Authors:  William J Barbaresi; Slavica K Katusic; Robert G Voigt
Journal:  Arch Pediatr Adolesc Med       Date:  2006-11

Review 5.  Autism as a paradigmatic complex genetic disorder.

Authors:  Jeremy Veenstra-Vanderweele; Susan L Christian; Edwin H Cook
Journal:  Annu Rev Genomics Hum Genet       Date:  2004       Impact factor: 8.929

6.  Priorities for autism spectrum disorder risk communication and ethics.

Authors:  Michael Yudell; Holly K Tabor; Geraldine Dawson; John Rossi; Craig Newschaffer
Journal:  Autism       Date:  2012-08-23

7.  Parental perceived value of a diagnosis for intellectual disability (ID): a qualitative comparison of families with and without a diagnosis for their child's ID.

Authors:  Nancy L Makela; Patricia H Birch; Jan M Friedman; Carlo A Marra
Journal:  Am J Med Genet A       Date:  2009-11       Impact factor: 2.802

8.  Parental interest in a genetic risk assessment test for autism spectrum disorders.

Authors:  Vivien Narcisa; Marie Discenza; Erica Vaccari; Beth Rosen-Sheidley; Antonio Y Hardan; Elizabeth Couchon
Journal:  Clin Pediatr (Phila)       Date:  2012-11-27       Impact factor: 1.168

9.  The impact of chromosomal microarray on clinical management: a retrospective analysis.

Authors:  Lindsay B Henderson; Carolyn D Applegate; Elizabeth Wohler; Molly B Sheridan; Julie Hoover-Fong; Denise A S Batista
Journal:  Genet Med       Date:  2014-03-13       Impact factor: 8.822

Review 10.  Autistic phenotypes and genetic testing: state-of-the-art for the clinical geneticist.

Authors:  C Lintas; A M Persico
Journal:  J Med Genet       Date:  2008-08-26       Impact factor: 6.318

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  6 in total

1.  Impacts of variants of uncertain significance on parental perceptions of children after prenatal chromosome microarray testing.

Authors:  Preeya Desai; Hannah Haber; Jessica Bulafka; Amita Russell; Rebecca Clifton; Julia Zachary; Seonjoo Lee; Tianshu Feng; Ronald Wapner; Catherine Monk; Wendy K Chung
Journal:  Prenat Diagn       Date:  2018-07-24       Impact factor: 3.050

2.  Genetic testing and autism: Tutorial for communication sciences and disorders.

Authors:  Laura S DeThorne; Stephanie Ceman
Journal:  J Commun Disord       Date:  2018-05-28       Impact factor: 2.288

3.  "Peas in a pod": Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults.

Authors:  Rozanna Lilley; Wenn Lawson; Gabrielle Hall; Joanne Mahony; Hayley Clapham; Melanie Heyworth; Samuel Arnold; Julian Trollor; Michael Yudell; Elizabeth Pellicano
Journal:  J Autism Dev Disord       Date:  2022-07-14

4.  Comparison of maternal beliefs about causes of autism spectrum disorder and association with utilization of services and treatments.

Authors:  Virginia Chaidez; Erik Fernandez Y Garcia; Lulu W Wang; Kathleen Angkustsiri; Paula Krakowiak; Irva Hertz-Picciotto; Robin L Hansen
Journal:  Child Care Health Dev       Date:  2018-08-22       Impact factor: 2.943

5.  Correlates of genetic attributions among parents of children in the USA with developmental disabilities.

Authors:  Bridget Kiely; Sujit Vettam; Andrew Adesman
Journal:  Appl Clin Genet       Date:  2019-04-12

6.  Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder.

Authors:  Kayla E Wagner; Jennifer B McCormick; Sarah Barns; Molly Carney; Frank A Middleton; Steven D Hicks
Journal:  J Autism Dev Disord       Date:  2019-03-22
  6 in total

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