Autism, autonomy, and research

In M. Ariel Casio & Eric Racine (eds.), Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation. Oxford University Press (2019)
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Abstract

This chapter addresses ethical issues for informed consent when recruiting autistic participants for research. The process of informed consent for participation in research involves some abilities, such as dialogue and understanding the intentions of the researchers, that can be especially challenging when autistic individuals are being asked to participate. This chapter reviews these abilities, and suggests ways to provide meaningful support to promote autonomy and help researchers meet their responsibilities. Beyond these more general challenges, it explores Hans Jonas’s suggestion that true informed consent for research requires that participants identify with the goals of the researchers. Given the plurality of perspectives on how to respond to autism, Jonas’s ideas point to additional ethical concerns that can arise when autistic people are recruited for research on autism.

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Kenneth A. Richman
Massachusetts College of Pharmacy and Health Sciences

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