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Parents’ Perspectives on Participating in Genetic Research in Autism / Magan TROTTIER in Journal of Autism and Developmental Disorders, 43-3 (March 2013)
[article]
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
in Journal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.556-568[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 What does genetic research tell us about the origins of language and literacy development? A reflection on Verhoef et al. (2020) / B. W. CHOW in Journal of Child Psychology and Psychiatry, 62-6 (June 2021)
[article]
Titre : What does genetic research tell us about the origins of language and literacy development? A reflection on Verhoef et al. (2020) Type de document : Texte imprimé et/ou numérique Auteurs : B. W. CHOW, Auteur ; S. W. L. WONG, Auteur Article en page(s) : p.739-741 Langues : Anglais (eng) Mots-clés : Child, Preschool Genetic Research Humans Language Literacy Index. décimale : PER Périodiques Résumé : Quantitative genetic research has set the stage for the exploration of genetic influences and the underlying mechanisms that undergird language and literacy development. Following this line of enquiry, Verhoef et al. (2020) address a critical issue related to genetic processes by comparing whether the genetic mechanism known as innovation or amplification plays a more pivotal role in literacy development during the period of early childhood to early adolescence, using the cutting-edge technique called the genome-wide complex trait analysis. This commentary reviews and discusses the implications of the provocative findings that stem from their study and offers concrete directions for future research. Embedded in our reflections are discussions related to the generalist genes vs genetic specificity debate, language universality vs specificity, as well as the role of environment in genetic influences. Taken together, the discussions in the commentary have highlighted the need for more in-depth explorations of the interplay between genes and literacy development through a multi-disciplinary approach. En ligne : http://dx.doi.org/10.1111/jcpp.13399 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=456
in Journal of Child Psychology and Psychiatry > 62-6 (June 2021) . - p.739-741[article] What does genetic research tell us about the origins of language and literacy development? A reflection on Verhoef et al. (2020) [Texte imprimé et/ou numérique] / B. W. CHOW, Auteur ; S. W. L. WONG, Auteur . - p.739-741.
Langues : Anglais (eng)
in Journal of Child Psychology and Psychiatry > 62-6 (June 2021) . - p.739-741
Mots-clés : Child, Preschool Genetic Research Humans Language Literacy Index. décimale : PER Périodiques Résumé : Quantitative genetic research has set the stage for the exploration of genetic influences and the underlying mechanisms that undergird language and literacy development. Following this line of enquiry, Verhoef et al. (2020) address a critical issue related to genetic processes by comparing whether the genetic mechanism known as innovation or amplification plays a more pivotal role in literacy development during the period of early childhood to early adolescence, using the cutting-edge technique called the genome-wide complex trait analysis. This commentary reviews and discusses the implications of the provocative findings that stem from their study and offers concrete directions for future research. Embedded in our reflections are discussions related to the generalist genes vs genetic specificity debate, language universality vs specificity, as well as the role of environment in genetic influences. Taken together, the discussions in the commentary have highlighted the need for more in-depth explorations of the interplay between genes and literacy development through a multi-disciplinary approach. En ligne : http://dx.doi.org/10.1111/jcpp.13399 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=456 Brief Report: Recruitment and Retention of Minority Children for Autism Research / Irina ZAMORA in Journal of Autism and Developmental Disorders, 46-2 (February 2016)
[article]
Titre : Brief Report: Recruitment and Retention of Minority Children for Autism Research Type de document : Texte imprimé et/ou numérique Auteurs : Irina ZAMORA, Auteur ; Marian E. WILLIAMS, Auteur ; Marcia HIGAREDA, Auteur ; Barbara Y. WHEELER, Auteur ; Pat LEVITT, Auteur Année de publication : 2016 Article en page(s) : p.698-703 Langues : Anglais (eng) Mots-clés : Minorités Autism spectrum disorder Recruitment Latino Genetic research Index. décimale : PER Périodiques Résumé : Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1–17, 2002; Kelly et al. in J Nat Med Assoc 97:777–783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5–17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2603-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280
in Journal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.698-703[article] Brief Report: Recruitment and Retention of Minority Children for Autism Research [Texte imprimé et/ou numérique] / Irina ZAMORA, Auteur ; Marian E. WILLIAMS, Auteur ; Marcia HIGAREDA, Auteur ; Barbara Y. WHEELER, Auteur ; Pat LEVITT, Auteur . - 2016 . - p.698-703.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 46-2 (February 2016) . - p.698-703
Mots-clés : Minorités Autism spectrum disorder Recruitment Latino Genetic research Index. décimale : PER Périodiques Résumé : Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1–17, 2002; Kelly et al. in J Nat Med Assoc 97:777–783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5–17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2603-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=280