- <Centre d'Information et de documentation du CRA Rhône-Alpes
- CRA
- Informations pratiques
-
Adresse
Centre d'information et de documentation
Horaires
du CRA Rhône-Alpes
Centre Hospitalier le Vinatier
bât 211
95, Bd Pinel
69678 Bron CedexLundi au Vendredi
Contact
9h00-12h00 13h30-16h00Tél: +33(0)4 37 91 54 65
Mail
Fax: +33(0)4 37 91 54 37
-
Adresse
Détail de l'auteur
Auteur Rebecca POULSEN |
Documents disponibles écrits par cet auteur (3)
Faire une suggestion Affiner la rechercheAnti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2023) / Heini M. NATRI in Autism Research, 16-4 (April 2023)
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
in Autism > 28-7 (July 2024) . - p.1719-1731[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
Titre : Reporting community involvement in autism research: Findings from the journal Autism : Autism Type de document : Texte imprimé et/ou numérique Auteurs : Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.490-503 Langues : Anglais (eng) Mots-clés : autism community involvement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547
in Autism > 29-2 (February 2025) . - p.490-503[article] Reporting community involvement in autism research: Findings from the journal Autism : Autism [Texte imprimé et/ou numérique] / Diana Weiting TAN, Auteur ; Laura CRANE, Auteur ; Tori HAAR, Auteur ; Melanie HEYWORTH, Auteur ; Rebecca POULSEN, Auteur ; Elizabeth PELLICANO, Auteur . - p.490-503.
Langues : Anglais (eng)
in Autism > 29-2 (February 2025) . - p.490-503
Mots-clés : autism community involvement participatory research patient and public involvement stakeholders Index. décimale : PER Périodiques Résumé : Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, Autism introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we - a team of Autistic and non-autistic researchers - searched for articles published in Autism in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers - or even assume control of the research process. Lay abstract There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal Autism made it a rule for authors to report whether they involved community members in their work; and if they did, how they had done so. In this study, we wanted to see how this new rule has changed things. Our team of Autistic and non-autistic researchers read all 283 articles published in Autism in 2019, about 2 years before the rule was in place, and in 2022, about 1 year after. We recorded what each article was about and how the community was involved. We found there was an increase in how often articles talked about community involvement - from about 10% before the rule to over 50% after. Most of these studies, however, only involved community members giving advice, with the researchers making most decisions about the research. This was especially true for applied research (like wellbeing) rather than basic science (like causes of autism). Also, some of these articles were unclear or did not give enough information for us to understand how the community was involved. This tells us that while it is promising that more community involvement is reported, researchers need to describe this involvement more clearly. It is also important for community members to have a bigger say in research by sharing power with the researchers or even leading the research themselves. En ligne : https://dx.doi.org/10.1177/13623613241275263 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547
