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A Passing Problem: Evaluating Harm and Benefit in Autism Research.
Ari Ne'eman1, Kenneth A Richman2, Allison M McCarthy3
1PhD candidate in health policy at Harvard University.
Ethics & Human Research
|November 21, 2023
Summary
Autism research often aims to reduce autistic traits, pressuring autistic individuals to "pass" as nonautistic. This study proposes an ethical framework for IRBs to evaluate autism interventions, prioritizing non-passing goals and minimizing harm.
Area of Science:
- Neurodevelopmental Disorders
- Bioethics
- Research Ethics
Background:
- Autism intervention research frequently prioritizes reducing autistic traits.
- This focus can create pressure for autistic individuals to "pass" as nonautistic.
- Evidence suggests potential harms associated with these "passing" demands.
Purpose of the Study:
- To advocate for Institutional Review Boards (IRBs) to scrutinize autism research for "clinical passing" demands.
- To propose an ethical framework for evaluating the appropriateness of autism intervention goals.
- To identify promising practices for stakeholders addressing these ethical concerns.
Main Methods:
- Analysis of common outcome measures in autism intervention research to identify "passing" demands.
- Development of an ethical framework for evaluating intervention goals.
- Review of existing literature on the harms of "passing" and ethical considerations in research.
Main Results:
- Commonly used outcome measures in autism research may implicitly or explicitly include "passing" demands.
- The proposed ethical framework emphasizes pursuing beneficial, non-passing purposes through the least burdensome means.
- IRBs, researchers, and stakeholders need to actively address these ethical issues.
Conclusions:
- Autism intervention goals should be ethically evaluated to ensure they do not promote harmful "passing" behaviors.
- IRBs play a crucial role in safeguarding against unethical research practices in autism.
- Adopting a framework prioritizing non-passing, beneficial goals is essential for ethical autism research.
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