Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community

Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in the research context by requiring that disclosure include enumerated items: the purpose of the research, potential risks, etc. In 2018, federal guidelines were updated to require that disclosure adhere to the reasonable person standard, whereby participants must be given all information that an "average" person would want to know. Drawing on the Autistic community's unique concerns regarding research, we argue that, because of its emphasis on the informational wants of the "average" person, the reasonable person standard systematically fails to meet the informational needs of (many) people from minoritized populations. We argue for an individualized understanding of the reasonable person standard and provide recommendations for research teams.

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Journal
The American Journal of Bioethics
Published
2026-03-02
DOI
https://doi.org/10.1080/15265161.2026.2632012
Primary Topic
Ethics in Clinical Research
Type
article
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article

Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community

Crystal S. Williams, Abraham Graber, Katherine M. Walton, Tema Krempley et al.
The American Journal of Bioethics
Ethics in Clinical Research
article

Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community

Crystal S. Williams, Abraham Graber, Katherine M. Walton, Tema Krempley, Dana Howard, Manisha Khatiwada
article en

Abstract

Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in the research context by requiring that disclosure include enumerated items: the purpose of the research, potential risks, etc. In 2018, federal guidelines were updated to require that disclosure adhere to the reasonable person standard, whereby participants must be given all information that an "average" person would want to know. Drawing on the Autistic community's unique concerns regarding research, we argue that, because of its emphasis on the informational wants of the "average" person, the reasonable person standard systematically fails to meet the informational needs of (many) people from minoritized populations. We argue for an individualized understanding of the reasonable person standard and provide recommendations for research teams.

The American Journal of Bioethics
University of Illinois Urbana-Champaign (US), The Ohio State University Wexner Medical Center (US), The Ohio State University (US)
Peace, Justice and strong institutions
Openalex Percentile: Top 41%
Ethics in Clinical Research
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Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community — Crystal S. Williams, Abraham Graber, et al. · The American Journal of Bioethics (2026) | TGRS Research Map | TGRS