Literature DB >> 22782649

Parents' perspectives on participating in genetic research in autism.

Magan Trottier1, Wendy Roberts, Irene Drmic, Stephen W Scherer, Rosanna Weksberg, Cheryl Cytrynbaum, David Chitayat, Cheryl Shuman, Fiona A Miller.   

Abstract

Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants' needs in the research process. We report on families' motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families' decisions to participate in autism genetic research and provide points to consider for this population of research participants.

Entities:  

Mesh：

Year:  2013        PMID： 22782649     DOI： 10.1007/s10803-012-1592-y

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


  44 in total

1.  Harrdiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation.

Authors:  Mary Jane Weiss
Journal:  Autism       Date:  2002-03

2.  Uncertainty and perceived personal control among parents of children with rare chromosome conditions: the role of genetic counseling.

Authors:  Shawn E Lipinski; Michael J Lipinski; Leslie G Biesecker; Barbara B Biesecker
Journal:  Am J Med Genet C Semin Med Genet       Date:  2006-11-15       Impact factor: 3.908

3.  Patients' perceptions of what makes genetic counselling effective: an interpretative phenomenological analysis.

Authors:  Rhona Macleod; David Craufurd; Katie Booth
Journal:  J Health Psychol       Date:  2002-03

4.  Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer.

Authors:  Ann-Marie Codori; Tracy Waldeck; Gloria M Petersen; Diana Miglioretti; Jill D Trimbath; Miriam A Tillery
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

5.  An investigation of patients' motivations for their participation in genetics-related research.

Authors:  N Hallowell; S Cooke; G Crawford; A Lucassen; M Parker; C Snowdon
Journal:  J Med Ethics       Date:  2010-01       Impact factor: 2.903

Review 6.  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

7.  Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis.

Authors:  Susan A Treloar; Katherine I Morley; Sandra D Taylor; Wayne D Hall
Journal:  Community Genet       Date:  2007

8.  Communication of biobanks' research results: what do (potential) participants want?

Authors:  Tineke M Meulenkamp; Sjef K Gevers; Jasper A Bovenberg; Gerard H Koppelman; Astrid van Hylckama Vlieg; Ellen M A Smets
Journal:  Am J Med Genet A       Date:  2010-10       Impact factor: 2.802

9.  Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization.

Authors:  E S Tambor; B A Bernhardt; G A Chase; R R Faden; G Geller; K J Hofman; N A Holtzman
Journal:  Am J Hum Genet       Date:  1994-10       Impact factor: 11.025

10.  Strong association of de novo copy number mutations with autism.

Authors:  Jonathan Sebat; B Lakshmi; Dheeraj Malhotra; Jennifer Troge; Christa Lese-Martin; Tom Walsh; Boris Yamrom; Seungtai Yoon; Alex Krasnitz; Jude Kendall; Anthony Leotta; Deepa Pai; Ray Zhang; Yoon-Ha Lee; James Hicks; Sarah J Spence; Annette T Lee; Kaija Puura; Terho Lehtimäki; David Ledbetter; Peter K Gregersen; Joel Bregman; James S Sutcliffe; Vaidehi Jobanputra; Wendy Chung; Dorothy Warburton; Mary-Claire King; David Skuse; Daniel H Geschwind; T Conrad Gilliam; Kenny Ye; Michael Wigler
Journal:  Science       Date:  2007-03-15       Impact factor: 47.728
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  13 in total

1.  Pathogenic rare copy number variants in community-based schizophrenia suggest a potential role for clinical microarrays.

Authors:  Gregory Costain; Anath C Lionel; Daniele Merico; Pamela Forsythe; Kathryn Russell; Chelsea Lowther; Tracy Yuen; Janice Husted; Dimitri J Stavropoulos; Marsha Speevak; Eva W C Chow; Christian R Marshall; Stephen W Scherer; Anne S Bassett
Journal:  Hum Mol Genet       Date:  2013-06-27       Impact factor: 6.150

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

3.  US Military Service Members' Reasons for Deciding to Participate in Health Research.

Authors:  Wendy A Cook; Kristal C Melvin; Ardith Z Doorenbos
Journal:  Res Nurs Health       Date:  2017-02-10       Impact factor: 2.228

4.  Does a duty of disclosure foster special treatment of genetic research participants?

Authors:  Robin Z Hayeems; Fiona A Miller; Jessica P Bytautas; Li Li
Journal:  J Genet Couns       Date:  2013-05-17       Impact factor: 2.537

5.  Autism Spectrum Disorder and Genetic Testing: Parents' Attitudes-Data from Turkish Sample.

Authors:  Aynur Bütün Ayhan; Utku Beyazıt; Şenay Topuz; Çağla Zeynep Tunay; Maryam Nazhad Abbas; Serkan Yılmaz
Journal:  J Autism Dev Disord       Date:  2020-11-21

6.  Evaluating genetic counseling for individuals with schizophrenia in the molecular age.

Authors:  Gregory Costain; Mary Jane Esplen; Brenda Toner; Stephen W Scherer; Wendy S Meschino; Kathleen A Hodgkinson; Anne S Bassett
Journal:  Schizophr Bull       Date:  2012-12-12       Impact factor: 9.306

7.  Brief Report: Recruitment and Retention of Minority Children for Autism Research.

Authors:  Irina Zamora; Marian E Williams; Marcia Higareda; Barbara Y Wheeler; Pat Levitt
Journal:  J Autism Dev Disord       Date:  2016-02

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

Authors:  Marian Reiff; Eva Bugos; Ellen Giarelli; Barbara A Bernhardt; Nancy B Spinner; Pamela L Sankar; Surabhi Mulchandani
Journal:  J Autism Dev Disord       Date:  2017-05

9.  Why parents consent to their children's participation in genetic research: A study of parental decision making.

Authors:  Sunita Kumari; Triptish Bhatia; Nagendra N Mishra; Nupur Kumari; Sreelatha S Narayanan; Deepak Malik; Smita N Deshpande
Journal:  Indian J Med Ethics       Date:  2019 Oct-Dec

10.  Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

Authors:  Melissa Raspa; Ryan S Paquin; Derek S Brown; Sara Andrews; Anne Edwards; Rebecca Moultrie; Laura Wagner; MaryKate Frisch; Lauren Turner-Brown; Anne C Wheeler
Journal:  Value Health       Date:  2020-10-26       Impact factor: 5.725
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