Un problème de 'passing': évaluer les préjudices et bénéfices dans la recherche sur l'autisme

Ajouté le 19/10/2024

Type de contenu

Article de revue du type Perspective (novembre 2023 ; anglais)

Ari Ne’eman * , Kenneth Richman , Allison McCarthy , Daniel Wilkenfeld *

A Passing problem: Evaluating harm and benefit in autism research publié dans la revue "Ethics & human research" n°45, vol.6, 16 pages , doi: 10.1002/eahr.500188

*Deux co-auteur·rices se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

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Résumé/Présentation

La recherche sur l'autisme cherche souvent à évaluer des interventions ou à informer leur développement. Malheureusement, les chercheurs supposent souvent que l'intervention pour l'autisme doit réduire les traits autistiques, fixant ainsi comme objectif du traitement que les personnes autistes tentent de « passer » pour non autistes. Un nombre croissant de preuves souligne les graves préjudices potentiels des exigences de passing. Nous expliquons pourquoi il est important que les comités d'éthique de la recherche (IRB) examinent attentivement les recherches sur l'autisme en ce qui concerne les exigences cliniques de passing, et nous documentons l'existence de telles exigences dans les mesures de résultats couramment utilisées dans la recherche sur l'autisme. Nous proposons un cadre éthique pour les IRB et autres parties prenantes afin d'évaluer la pertinence éthique des objectifs de traitement dans les interventions pour l'autisme ou les recherches connexes, en soulignant que les objectifs de traitement doivent viser un but bénéfique non basé sur le passing et utiliser les moyens les moins contraignants pour atteindre un tel objectif. Nous mettons également en avant des pratiques prometteuses potentielles pour les IRB, les chercheurs et autres parties prenantes cherchant à aborder ces questions dans la recherche sur l'autisme.

Pour information:

(1) Les références en bleu sont des ressources référencées sur notre site.

(2) Les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la liste des ressources publiées et partagées sur le site.

(3) Les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes.

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