4 recherche sur le mot-clé 'Bioethics'

Does Applied Behavior Analysis Violate Principles of Ethics and Bioethics? A Response to Wilkenfeld and McCarthy (2020) / Britany MELTON in Focus on Autism and Other Developmental Disabilities, 40-4 (December 2025)  

Public ISBD [article]  inFocus on Autism and Other Developmental Disabilities > 40-4 (December 2025) . - p.179-188 Titre : Does Applied Behavior Analysis Violate Principles of Ethics and Bioethics? A Response to Wilkenfeld and McCarthy (2020) Type de document : texte imprimé Auteurs : Britany MELTON, Auteur ; Mary Jane WEISS, Auteur ; Joseph CIHON, Auteur ; Julia FERGUSON, Auteur ; Robert ROSS, Auteur ; Ian MELTON, Auteur ; Justin LEAF, Auteur Article en page(s) : p.179-188 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  applied behavior analysis  Post-Traumatic Stress Disorder  ethics  bioethics Index. décimale : PER Périodiques Résumé : Wilkenfeld and McCarthy’s 2020 article, "Ethical Concerns with Applied Behavior Analysis for Autism Spectrum 'Disorder'," is part of a growing line of peer-reviewed articles that are critical of interventions based on the principles of applied behavior analysis (ABA) for autistics/individuals diagnosed with autism spectrum disorder (ASD). Throughout this article, the authors make claims that ABA-based intervention is abusive, coercive, and results in negative outcomes (e.g., Post-Traumatic Stress Disorder) for autistic/individuals diagnosed with ASD utilizing a bioethics framework. More specifically, the purpose of this article is to provide an analysis and discussion of Wilkenfeld and McCarthy’s rationales and conclusions by highlighting areas of agreement and concern, and those requiring additional clarification. We hope this analysis will help continue progressing the field of ABA-based interventions for autistic children and their families, advance discussions among behavior analysts and their consumers, and underscore pathways forward for all involved. En ligne : https://dx.doi.org/10.1177/10883576251349214 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572 [article] Does Applied Behavior Analysis Violate Principles of Ethics and Bioethics? A Response to Wilkenfeld and McCarthy (2020) [texte imprimé] / Britany MELTON, Auteur ; Mary Jane WEISS, Auteur ; Joseph CIHON, Auteur ; Julia FERGUSON, Auteur ; Robert ROSS, Auteur ; Ian MELTON, Auteur ; Justin LEAF, Auteur . - p.179-188. Langues : Anglais (eng) in Focus on Autism and Other Developmental Disabilities > 40-4 (December 2025) . - p.179-188 Mots-clés : autism spectrum disorder  applied behavior analysis  Post-Traumatic Stress Disorder  ethics  bioethics Index. décimale : PER Périodiques Résumé : Wilkenfeld and McCarthy’s 2020 article, "Ethical Concerns with Applied Behavior Analysis for Autism Spectrum 'Disorder'," is part of a growing line of peer-reviewed articles that are critical of interventions based on the principles of applied behavior analysis (ABA) for autistics/individuals diagnosed with autism spectrum disorder (ASD). Throughout this article, the authors make claims that ABA-based intervention is abusive, coercive, and results in negative outcomes (e.g., Post-Traumatic Stress Disorder) for autistic/individuals diagnosed with ASD utilizing a bioethics framework. More specifically, the purpose of this article is to provide an analysis and discussion of Wilkenfeld and McCarthy’s rationales and conclusions by highlighting areas of agreement and concern, and those requiring additional clarification. We hope this analysis will help continue progressing the field of ABA-based interventions for autistic children and their families, advance discussions among behavior analysts and their consumers, and underscore pathways forward for all involved. En ligne : https://dx.doi.org/10.1177/10883576251349214 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572

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 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] / 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

Parent attitudes towards predictive testing for autism in the first year of life / Aurora M. WASHINGTON in Journal of Neurodevelopmental Disorders, 16 (2024)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 16 (2024) Titre : Parent attitudes towards predictive testing for autism in the first year of life Type de document : texte imprimé Auteurs : Aurora M. WASHINGTON, Auteur ; Amanda H. MERCER, Auteur ; Catherine A. BURROWS, Auteur ; Stephen R. DAGER, Auteur ; Jed T. ELISON, Auteur ; Annette M. ESTES, Auteur ; Rebecca GRZADZINSKI, Auteur ; Chimei LEE, Auteur ; Joseph PIVEN, Auteur ; John R. Jr PRUETT, Auteur ; Mark D. SHEN, Auteur ; Benjamin WILFOND, Auteur ; Jason WOLFF, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Katherine E. MACDUFFIE, Auteur Langues : Anglais (eng) Mots-clés : Humans  Parents  Infant  Male  Female  Autistic Disorder/diagnosis  Adult  Biomarkers  Qualitative Research  Autism Spectrum Disorder/diagnosis  Autism  Bioethics  Prediction  Stakeholder engagement Index. décimale : PER Périodiques Résumé : BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy. METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods. RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction. CONCLUSION: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed. En ligne : https://dx.doi.org/10.1186/s11689-024-09561-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575 [article] Parent attitudes towards predictive testing for autism in the first year of life [texte imprimé] / Aurora M. WASHINGTON, Auteur ; Amanda H. MERCER, Auteur ; Catherine A. BURROWS, Auteur ; Stephen R. DAGER, Auteur ; Jed T. ELISON, Auteur ; Annette M. ESTES, Auteur ; Rebecca GRZADZINSKI, Auteur ; Chimei LEE, Auteur ; Joseph PIVEN, Auteur ; John R. Jr PRUETT, Auteur ; Mark D. SHEN, Auteur ; Benjamin WILFOND, Auteur ; Jason WOLFF, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Katherine E. MACDUFFIE, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 16 (2024) Mots-clés : Humans  Parents  Infant  Male  Female  Autistic Disorder/diagnosis  Adult  Biomarkers  Qualitative Research  Autism Spectrum Disorder/diagnosis  Autism  Bioethics  Prediction  Stakeholder engagement Index. décimale : PER Périodiques Résumé : BACKGROUND: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy. METHODS: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods. RESULTS: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction. CONCLUSION: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed. En ligne : https://dx.doi.org/10.1186/s11689-024-09561-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575

Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder / Kayla E. WAGNER in Journal of Autism and Developmental Disorders, 50-9 (September 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3114-3125 Titre : Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Kayla E. WAGNER, Auteur ; Jennifer B. MCCORMICK, Auteur ; Sarah BARNS, Auteur ; Molly CARNEY, Auteur ; Frank A. MIDDLETON, Auteur ; Steven D. HICKS, Auteur Article en page(s) : p.3114-3125 Langues : Anglais (eng) Mots-clés : Autism  Bioethics  Diagnosis  Epigenetics  Parent perspectives  biomarkers in autism spectrum disorder that is assigned to The Research Foundation  for the State University of New York, The Penn State Research Foundation and  Quadrant Biosciences Inc., and licensed to Quadrant Biosciences Inc. SDH is a paid  consultant for Quadrant Biosciences Inc. These conflicts of interest are actively  managed by the Penn State College of Medicine. KW and SB are employees of Quadrant  Biosciences Inc. Index. décimale : PER Périodiques Résumé : Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n = 131), non-ASD developmental delay (n = 39), and typical development (n = 74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p = 0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology. En ligne : http://dx.doi.org/10.1007/s10803-019-03990-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 [article] Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder [texte imprimé] / Kayla E. WAGNER, Auteur ; Jennifer B. MCCORMICK, Auteur ; Sarah BARNS, Auteur ; Molly CARNEY, Auteur ; Frank A. MIDDLETON, Auteur ; Steven D. HICKS, Auteur . - p.3114-3125. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3114-3125 Mots-clés : Autism  Bioethics  Diagnosis  Epigenetics  Parent perspectives  biomarkers in autism spectrum disorder that is assigned to The Research Foundation  for the State University of New York, The Penn State Research Foundation and  Quadrant Biosciences Inc., and licensed to Quadrant Biosciences Inc. SDH is a paid  consultant for Quadrant Biosciences Inc. These conflicts of interest are actively  managed by the Penn State College of Medicine. KW and SB are employees of Quadrant  Biosciences Inc. Index. décimale : PER Périodiques Résumé : Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n = 131), non-ASD developmental delay (n = 39), and typical development (n = 74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p = 0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology. En ligne : http://dx.doi.org/10.1007/s10803-019-03990-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430