Parents’ Perspectives on Participating in Genetic Research in Autism
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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.
KeywordsAutism Parent experiences Genetic research Motivations Expectations Genetic result
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.
- Canvin, K., & Jacoby, A. (2006). Duty, desire or indifference? A qualitative study of patient decisions about recruitment to an epilepsy treatment trial. Trials, 12(7), 19–32.Google Scholar
- Charmaz, K. (2000). Grounded theory objectives and constructive methods (2nd ed., pp. 509–535). Thousand Oaks, CA: Sage.Google Scholar
- Fombonne, E. (2005). Epidemiological studies of autism and pervasive developmental disorders. In F. Volkmar (Ed.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 42–69). New York: Wiley.Google Scholar
- Miller, F. A., Giacomini, M., Ahern, C., Roberts, J. S., & de Laat, S. (2008). When research seems like clinical care: A qualitative study of the communication of individual cancer genetic research results. BMC Medical Ethics, 9(4), 1–12.Google Scholar
- Miller, D. T., Adam, M. P., Aradhya, S., Biesecker, L. G., Brothman, A. R., Carter, N. P., et al. (2010a). Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. American Journal of Medical Genetics, 86(5), 749–764.Google Scholar
- Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks/London/Delhi: Sage.Google Scholar
- Simons Foundation. (2010). Simons VIP connect: Simons variation in individuals project (VIP). Copyright, Simons Foundation, 2010. http://www.simonsvipconnect.org/. Accessed March 16, 2012.