Parents' Perspectives on Participating in Genetic Research in Autism

被引：29

作者：

Trottier, Magan ^{[1
,2
]}

Roberts, Wendy ^{[3
,4
,5
]}

Drmic, Irene ^{[3
]}

Scherer, Stephen W. ^{[2
,6
,7
]}

Weksberg, Rosanna ^{[1
,2
,5
,7
]}

Cytrynbaum, Cheryl ^{[1
,2
]}

Chitayat, David ^{[1
,2
,5
,8
]}

Shuman, Cheryl ^{[1
,2
]}

Miller, Fiona A. ^{[9
]}

机构：

[1] Hosp Sick Children, Div Clin & Metab Genet, Toronto, ON M5G 1X8, Canada

[2] Univ Toronto, Dept Mol Genet, Toronto, ON, Canada

[3] Hosp Sick Children, Autism Res Unit, Toronto, ON M5G 1X8, Canada

[4] Holland Bloorview Kids Rehabil Hosp, Toronto, ON, Canada

[5] Univ Toronto, Dept Pediat, Toronto, ON, Canada

[6] Hosp Sick Children, Ctr Appl Genom, Toronto, ON M5G 1X8, Canada

[7] Hosp Sick Children, Program Genet & Genome Biol, Toronto, ON M5G 1X8, Canada

[8] Mt Sinai Hosp, Dept Obstet & Gynecol, Prenatal Diag & Med Genet Program, Toronto, ON M5G 1X5, Canada

[9] Univ Toronto, Inst Hlth Policy Management & Evaluationred, Toronto, ON, Canada

来源：

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS | 2013年 / 43卷 / 03期

关键词：

Autism; Parent experiences; Genetic research; Motivations; Expectations; Genetic result; PERCEIVED PERSONAL CONTROL; REPORTED PRACTICES; RECURRENCE RISK; FAMILY STRESS; CHILDREN; TOLERANCE; AMBIGUITY; ATTITUDES; DISORDER; IMPACT;

D O I：

10.1007/s10803-012-1592-y

中图分类号：

B844 [发展心理学（人类心理学）];

学科分类号：

040202 ;

摘要：

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.

引用

页码：556 / 568

页数：13

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