Sponsor
This project was funded by the National Institute of Mental Health (R01MH121407). Research reported in this publication was also supported in part by the National Institute of General Medical Sciences of the National Institutes of Health Award Number RL5GM118963.
Published In
Neuroscience
Document Type
Pre-Print
Publication Date
2025
Subjects
Autism -- neurodevelopmental disorders
Abstract
Informed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations.
Rights
© Copyright the author(s) 2025
Locate the Document
DOI
10.1089/aut.2024.0263
Persistent Identifier
https://archives.pdx.edu/ds/psu/43154
Citation Details
Published as: Beck, K. B., MacKenziem, K. T., Kirby, A. V., McDonald, K., Moura, I., Breitenfeldt, K., ... & Working to increase Inclusivity in Research Ethics (WIRE) Consortium. (2025). Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability. Autism in Adulthood.
Description
This is the author’s version of a work that was accepted for publication. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published as: Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability. Autism in Adulthood.