Parents' perspectives on participating in genetic research in autism.
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.
Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.
Magan
M
Trottier
Wendy
W
Roberts
Irene
I
Drmic
Stephen W
SW
Scherer
Rosanna
R
Weksberg
Cheryl
C
Cytrynbaum
David
D
Chitayat
Cheryl
C
Shuman
Fiona A
FA
Miller
D000328:Adult; D001290:Attitude; D001321:Autistic Disorder / Q000235:genetics*; D005190:Family; D005260:Female; D036281:Genetic Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010290:Parents / Q000523:psychology*