Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers / Hannah RAPAPORT ; Rebecca POULSEN ; Michael YUDELL ; Elizabeth PELLICANO in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1719-1731 Titre : Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers Type de document : Texte imprimé et/ou numérique Auteurs : Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1719-1731 Langues : Anglais (eng) Mots-clés : autism  biobanks  bioethics  biomarkers  genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers [Texte imprimé et/ou numérique] / Hannah RAPAPORT, Auteur ; Rebecca POULSEN, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1719-1731. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1719-1731 Mots-clés : autism  biobanks  bioethics  biomarkers  genetics Index. décimale : PER Périodiques Résumé : There has been intense debate within the autistic and autism communities about the use of autism biobanks - repositories containing biological and phenotypic materials - and of genomic autism research more broadly. Here, we sought to understand the views and experiences of those contributing to one specific biobank, the Australian Autism Biobank. We adopted a multi-informant approach, conducting semi-structured interviews with 77 people, including 18 autistic probands, 46 parents and seven siblings, all of whom donated material to the Biobank, as well as six researchers employed on the project. Specifically, we asked: what motivated participants and researchers to contribute to the Australian Autism Biobank? And how did they feel about their involvement in that process? We analysed the data using reflexive thematic analysis, adopting an inductive approach within an essentialist framework. We identified three themes, which revealed a wide diversity of viewpoints, including positive conceptualisations of autism linked to neurodiversity and more negative conceptualisations linked to hopes for the development of genetic screening and reproductive choice. These findings have implications for the meaning, value and future directions of autism science. This research has been conducted using the Australian Autism Biobank resource. Lay abstract A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work. En ligne : https://dx.doi.org/10.1177/13623613231203938 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

In Utero Exposure to Selective Serotonin Reuptake Inhibitors and Risk for Autism Spectrum Disorder / Nicole B. GIDAYA in Journal of Autism and Developmental Disorders, 44-10 (October 2014)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 44-10 (October 2014) . - p.2558-2567 Titre : In Utero Exposure to Selective Serotonin Reuptake Inhibitors and Risk for Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Nicole B. GIDAYA, Auteur ; Brian K. LEE, Auteur ; Igor BURSTYN, Auteur ; Michael YUDELL, Auteur ; Erik L. MORTENSEN, Auteur ; Craig J. NEWSCHAFFER, Auteur Article en page(s) : p.2558-2567 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Selective serotonin reuptake inhibitors  Pregnancy  Depression Index. décimale : PER Périodiques Résumé : We investigated whether there is an association between increased risk for autism spectrum disorders (ASD) and selective serotonin reuptake inhibitors (SSRIs) used during pregnancy. This study used Denmark’s health and population registers to obtain information regarding prescription drugs, ASD diagnosis, and health and socioeconomic status. There were 1.5 % of cases and 0.7 % of controls exposed to SSRIs during the pregnancy period, and higher effect estimates observed with longer use. We found evidence that in utero exposure to SSRIs increases a child’s risk associated with ASD. These results, while adding to the limited knowledge on prenatal pharmacological exposures as potential ASD risk factors, need to be balanced against the benefits of indicated medication use by pregnant mothers. En ligne : http://dx.doi.org/10.1007/s10803-014-2128-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=240 [article] In Utero Exposure to Selective Serotonin Reuptake Inhibitors and Risk for Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Nicole B. GIDAYA, Auteur ; Brian K. LEE, Auteur ; Igor BURSTYN, Auteur ; Michael YUDELL, Auteur ; Erik L. MORTENSEN, Auteur ; Craig J. NEWSCHAFFER, Auteur . - p.2558-2567. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 44-10 (October 2014) . - p.2558-2567 Mots-clés : Autism spectrum disorders  Selective serotonin reuptake inhibitors  Pregnancy  Depression Index. décimale : PER Périodiques Résumé : We investigated whether there is an association between increased risk for autism spectrum disorders (ASD) and selective serotonin reuptake inhibitors (SSRIs) used during pregnancy. This study used Denmark’s health and population registers to obtain information regarding prescription drugs, ASD diagnosis, and health and socioeconomic status. There were 1.5 % of cases and 0.7 % of controls exposed to SSRIs during the pregnancy period, and higher effect estimates observed with longer use. We found evidence that in utero exposure to SSRIs increases a child’s risk associated with ASD. These results, while adding to the limited knowledge on prenatal pharmacological exposures as potential ASD risk factors, need to be balanced against the benefits of indicated medication use by pregnant mothers. En ligne : http://dx.doi.org/10.1007/s10803-014-2128-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=240

''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults / Rozanna LILLEY in Journal of Autism and Developmental Disorders, 53-3 (March 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1146-1161 Titre : ''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults Type de document : Texte imprimé et/ou numérique Auteurs : Rozanna LILLEY, Auteur ; Wenn LAWSON, Auteur ; Gabrielle HALL, Auteur ; Joanne MAHONY, Auteur ; Hayley CLAPHAM, Auteur ; Melanie HEYWORTH, Auteur ; Samuel ARNOLD, Auteur ; Julian TROLLOR, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.1146-1161 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults. En ligne : https://doi.org/10.1007/s10803-022-05667-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500 [article] ''Peas in a pod'': Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults [Texte imprimé et/ou numérique] / Rozanna LILLEY, Auteur ; Wenn LAWSON, Auteur ; Gabrielle HALL, Auteur ; Joanne MAHONY, Auteur ; Hayley CLAPHAM, Auteur ; Melanie HEYWORTH, Auteur ; Samuel ARNOLD, Auteur ; Julian TROLLOR, Auteur ; Michael YUDELL, Auteur ; Elizabeth PELLICANO, Auteur . - p.1146-1161. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-3 (March 2023) . - p.1146-1161 Index. décimale : PER Périodiques Résumé : In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic analysis, we uncovered a rich body of reflections on shared Autistic identity and identified three major themes within that data set: 'conceptualising the Autistic family', 'creating Autistic community', and 'contesting Autistic identity'. Overall, the study provides insights into the active creation of shared Autistic identity and the importance of Autistic community to these late-diagnosed autistic adults. En ligne : https://doi.org/10.1007/s10803-022-05667-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=500

Priorities for autism spectrum disorder risk communication and ethics / Michael YUDELL in Autism, 17-6 (November 2013)  

Public ISBD [article]  inAutism > 17-6 (November 2013) . - p.701-722 Titre : Priorities for autism spectrum disorder risk communication and ethics Type de document : Texte imprimé et/ou numérique Auteurs : Michael YUDELL, Auteur ; Holly K. TABOR, Auteur ; Geraldine DAWSON, Auteur ; John ROSSI, Auteur ; Craig J. NEWSCHAFFER, Auteur ; WORKING GROUP IN AUTISM RISK COMMUNICATION AND ETHICS 1,, Auteur Année de publication : 2013 Article en page(s) : p.701-722 Langues : Anglais (eng) Mots-clés : autism  ethics  risk communication Index. décimale : PER Périodiques Résumé : Autism spectrum disorders are an issue of increasing public health significance. The incidence of autism spectrum disorders has been increasing in recent years, and they are associated with significant personal and financial impacts for affected persons and their families. In recent years, a large number of scientific studies have been undertaken, which investigate genetic and environmental risk factors for autism, with more studies underway. At present, much remains unknown regarding autism spectrum disorder risk factors, but the emerging picture of causation is in many cases complex, with multiple genes and gene–environment interactions being at play. The complexity and uncertainty surrounding autism spectrum disorder risk factors raise a number of questions regarding the ethical considerations that should be taken into account when undertaking autism spectrum disorder risk communication. At present, however, little has been written regarding autism spectrum disorder risk communication and ethics. This article summarizes the findings of a recent conference investigating ethical considerations and policy recommendations in autism spectrum disorder risk communication, which to the authors’ knowledge is the first of its kind. Here, the authors discuss a number of issues, including uncertainty; comprehension; inadvertent harm; justice; and the appropriate roles of clinicians, scientists, and the media in autism spectrum disorder risk communication. En ligne : http://dx.doi.org/10.1177/1362361312453511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=218 [article] Priorities for autism spectrum disorder risk communication and ethics [Texte imprimé et/ou numérique] / Michael YUDELL, Auteur ; Holly K. TABOR, Auteur ; Geraldine DAWSON, Auteur ; John ROSSI, Auteur ; Craig J. NEWSCHAFFER, Auteur ; WORKING GROUP IN AUTISM RISK COMMUNICATION AND ETHICS 1,, Auteur . - 2013 . - p.701-722. Langues : Anglais (eng) in Autism > 17-6 (November 2013) . - p.701-722 Mots-clés : autism  ethics  risk communication Index. décimale : PER Périodiques Résumé : Autism spectrum disorders are an issue of increasing public health significance. The incidence of autism spectrum disorders has been increasing in recent years, and they are associated with significant personal and financial impacts for affected persons and their families. In recent years, a large number of scientific studies have been undertaken, which investigate genetic and environmental risk factors for autism, with more studies underway. At present, much remains unknown regarding autism spectrum disorder risk factors, but the emerging picture of causation is in many cases complex, with multiple genes and gene–environment interactions being at play. The complexity and uncertainty surrounding autism spectrum disorder risk factors raise a number of questions regarding the ethical considerations that should be taken into account when undertaking autism spectrum disorder risk communication. At present, however, little has been written regarding autism spectrum disorder risk communication and ethics. This article summarizes the findings of a recent conference investigating ethical considerations and policy recommendations in autism spectrum disorder risk communication, which to the authors’ knowledge is the first of its kind. Here, the authors discuss a number of issues, including uncertainty; comprehension; inadvertent harm; justice; and the appropriate roles of clinicians, scientists, and the media in autism spectrum disorder risk communication. En ligne : http://dx.doi.org/10.1177/1362361312453511 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=218

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