Dans le cadre des Ateliers de la bioéthique, Ariel Cascio, Ph.D. et stagiaire postdoctorale à la Neuroethics Research Unit de l’Institut de recherches cliniques de Montréal, nous offrira une présentation intitulée « Ethical and social issues in autism research: Engaging with literature and stakeholders to build best practices ».

Résumé

Autism is a spectrum condition currently classified as a neurodevelopmental disorder, characterized by differences in social interaction, social communication, and repetitive behaviors. Autism diagnoses have increased in recent decades, accompanied by greater research attention in basic, clinical, and social sciences. This talk addresses ethical and social issues in autism research, focusing particularly on the relational and experiential aspects of research participation. Including autistic people in research can be considered an important form of social inclusion, respecting the disability rights call “nothing about us without us.” However, common characteristics and experiences of people with autism may raise challenges for ethical and meaningful research inclusion. We are therefore working with stakeholders from autism communities – including self-advocates, parents, advocacy organizations, professionals, and researchers – to develop best practices through a process of deliberation and reflection on findings from a literature review. This process is guided by the five guideposts of our model of person-oriented research ethics. This talk will present background on the social context of research involving participants with autism, describe the model of person-oriented research ethics, reflect on the results of the literature review, and discuss the status and next steps of the deliberation process.

Biographie

Ariel Cascio, Ph.D. is a postdoctoral fellow at the Neuroethics Research Unit of the Institut de recherches cliniques de Montréal (Québec, Canada). Dr. Cascio received a doctorate in anthropology from Case Western Reserve University (Cleveland, OH, USA) after completing 11 months of ethnographic research on the experiences of adolescents and youth accessing autism-focused services in Italy. Several ongoing projects, primarily related to autism spectrum conditions, use lenses from anthropology and disability studies and focus on social and ethical issues, including in the context of research and health and human services. Dr. Cascio’s has been funded by the US-Italy Fulbright Commission.