A Passing problem: Evaluating harm and benefit in autism research

Added on 19/10/2024

Type de contenu

Journal article of the type Perspective ( ; english)

Ari Ne’eman * , Kenneth Richman , Allison McCarthy , Daniel Wilkenfeld *
A Passing problem: Evaluating harm and benefit in autism research published in the journal "Ethics & human research" n°45, vol.6, 16 pages , doi: 10.1002/eahr.500188

*Two co-authors had publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

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.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

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