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.
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.
- Content Type Journal Article
- Pages 1-13
- DOI 10.1007/s10803-012-1592-y
- Authors
- Magan Trottier, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada
- Wendy Roberts, Autism Research Unit, The Hospital for Sick Children, Toronto, ON, Canada
- Irene Drmic, Autism Research Unit, The Hospital for Sick Children, Toronto, ON, Canada
- Stephen W. Scherer, Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada
- Rosanna Weksberg, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada
- Cheryl Cytrynbaum, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada
- David Chitayat, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada
- Cheryl Shuman, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada
- Fiona A. Miller, Institute of Health Policy, Management and Evaluationred, University of Toronto, Toronto, ON, Canada
- Journal Journal of Autism and Developmental Disorders
- Online ISSN 1573-3432
- Print ISSN 0162-3257