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Parents’ Perspectives on Participating in Genetic Research in Autism

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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.

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Acknowledgments

Magan Trottier would like to acknowledge the support and assistance of her colleagues, Laura Winter, Melanie Napier and Nolan D’Souza and members of her Scientific Committee. Stephen W. Scherer holds the GlaxoSmithKline-CIHR Chair in Genome Sciences at the Hospital for Sick Children and University of Toronto. This research was supported by the Trainee Start-Up Fund at the Hospital for Sick Children’s Research Institute.

Conflict of interest

The authors declare that they have no conflict of interest.

Author information

Authors and Affiliations

  1. Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada

    Magan Trottier, Rosanna Weksberg, Cheryl Cytrynbaum, David Chitayat & Cheryl Shuman

  2. Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada

    Magan Trottier, Stephen W. Scherer, Rosanna Weksberg, Cheryl Cytrynbaum, David Chitayat & Cheryl Shuman

  3. Autism Research Unit, The Hospital for Sick Children, Toronto, ON, Canada

    Wendy Roberts & Irene Drmic

  4. Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada

    Wendy Roberts

  5. Department of Pediatrics, University of Toronto, Toronto, ON, Canada

    Wendy Roberts, Rosanna Weksberg & David Chitayat

  6. The Centre for Applied Genomics, The Hospital for Sick Children, Toronto, ON, Canada

    Stephen W. Scherer

  7. Program in Genetics and Genome Biology, The Hospital for Sick Children, Toronto, ON, Canada

    Stephen W. Scherer & Rosanna Weksberg

  8. Department of Obstetrics and Gynecology, The Prenatal Diagnosis and Medical Genetics Program, Mount Sinai Hospital, Toronto, ON, Canada

    David Chitayat

  9. Institute of Health Policy, Management and Evaluationred, University of Toronto, Toronto, ON, Canada

    Fiona A. Miller

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  1. Magan Trottier
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  2. Wendy Roberts
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  3. Irene Drmic
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  4. Stephen W. Scherer
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  6. Cheryl Cytrynbaum
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  9. Fiona A. Miller
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Corresponding author

Correspondence to Cheryl Shuman.

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Trottier, M., Roberts, W., Drmic, I. et al. Parents’ Perspectives on Participating in Genetic Research in Autism. J Autism Dev Disord 43, 556–568 (2013). https://doi.org/10.1007/s10803-012-1592-y

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  • DOI: https://doi.org/10.1007/s10803-012-1592-y

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