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. 2023 Nov-Dec;45(6):2-18.
doi: 10.1002/eahr.500188.

A Passing Problem: Evaluating Harm and Benefit in Autism Research

Ari Ne'eman  1 , Kenneth A Richman  2 , Allison M McCarthy  3 , Daniel Wilkenfeld  4
Affiliations

A Passing Problem: Evaluating Harm and Benefit in Autism Research

Ari Ne'eman et al. Ethics Hum Res. 2023 Nov-Dec.

Abstract

Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to "pass" as nonautistic. A growing body of evidence highlights serious potential harms from passing demands. We discuss why it is important for institutional review boards (IRBs) to scrutinize autism research for clinical passing demands, and we document the existence of such demands in outcome measures commonly employed in autism research. We propose an ethical framework for IRBs and others to make use of in evaluating the ethical appropriateness of particular treatment goals in autism intervention or intervention-adjacent research, emphasizing that treatment goals should be in pursuit of a beneficial nonpassing purpose and be the least burdensome means of accomplishing such a purpose. We also highlight potential promising practices for IRBs, investigators, and other stakeholders seeking to address these issues in autism research.

Keywords: autism; autism research; ethical framework; human research ethics; institutional review boards; neurodiversity; research ethics in autism.

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References

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