Parents’ Perspectives on Participating in Genetic Research in Autism / Magan TROTTIER in Journal of Autism and Developmental Disorders, 43-3 (March 2013)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.556-568 Titre : Parents’ Perspectives on Participating in Genetic Research in Autism Type de document : Texte imprimé et/ou numérique Auteurs : Magan TROTTIER, Auteur ; Wendy ROBERTS, Auteur ; Irene E. DRMIC, Auteur ; Stephen SCHERER, Auteur ; Rosanna WEKSBERG, Auteur ; Cheryl CYTRYNBAUM, Auteur ; David CHITAYAT, Auteur ; Cheryl SHUMAN, Auteur ; Fiona A. MILLER, Auteur Article en page(s) : p.556-568 Langues : Anglais (eng) Mots-clés : Autism  Parent experiences  Genetic research  Motivations  Expectations  Genetic result Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1007/s10803-012-1592-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192 [article] Parents’ Perspectives on Participating in Genetic Research in Autism [Texte imprimé et/ou numérique] / Magan TROTTIER, Auteur ; Wendy ROBERTS, Auteur ; Irene E. DRMIC, Auteur ; Stephen SCHERER, Auteur ; Rosanna WEKSBERG, Auteur ; Cheryl CYTRYNBAUM, Auteur ; David CHITAYAT, Auteur ; Cheryl SHUMAN, Auteur ; Fiona A. MILLER, Auteur . - p.556-568. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.556-568 Mots-clés : Autism  Parent experiences  Genetic research  Motivations  Expectations  Genetic result Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1007/s10803-012-1592-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192

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