Working with autism advocates to develop best practices for research
Ariel Cascio, PhD (Pragmatic Health Ethics Research Unit, McGill University); Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University); Jonathan Weiss, PhD (York University); Noha Elsherbini (John Abbott CEGEP, at the time of the study); Caitlin Courchesne (McGill University, at the time of the study); Olivia Silva (McGill University, at the time of the study); Members of the Autism Research Ethics Task Force
Kids Brain Health Network (KBHN); Banting Postdoctoral Fellowship; IRCM Foundation
This project addresses a central concern of anthropology, disability studies, and neuroethics: how groups can, do, or should account for diversity, specifically neurodiversity and the experiences of research participants with autism spectrum conditions. Scholars have noted that there is not enough research including people with autism, perhaps because researchers find it difficult to do or to propose to research ethics boards. This 3-phase project focuses on promoting the fair inclusion of people with autism in research and in conversations about research ethics.
In Phase 1, we will critically analyze published studies to determine what strategies researchers have previously used. In Phase 2, we will share our findings with a task force of researchers and potential research participants, including people with autism and their families, and ask them for feedback. We will also share findings on a public website where anyone can provide feedback. We will draft a task force report proposing best practices for inclusion of people with autism in research. In Phase 3, we will test and enrich these best practices by conducting a new study on the perspectives and experiences of people with autism.
The topic of this study will be based on community priorities in consultation with the task force. To determine if the task force recommendations were successful, we will also ask participants about their experiences of being in the study. Results will be shared in multiple and accessible ways, so that both the scientific community and people with autism can learn about our findings. This study is important because it will provide a clear and concrete set of guidelines that researchers can consult when they want to plan studies involving people with autism and that ethics boards can consult when they evaluate such studies. Ultimately, it will lead to more inclusion of people with autism in research and therefore a greater understanding of their needs and experiences.
Follow this project at https://www.autismresearchethics.net where you can subscribe for updates and provide feedback to the Task Force.
Cascio, M. A., & Racine, E. (2018). Person-Oriented Research Ethics: Integrating relational and everyday ethics in research. Accountability in Research, 25(3), 170-197.