Défis éthiques de la recherche participative avec des adultes autistes en Israël

Auteurs

Résumé

Les appels contemporains en faveur de la recherche participative soulèvent des questions éthiques particulières. Notre étude semi-participative à méthodologie mixte sur les besoins des adultes autistes en Israël a fait appel à un comité consultatif de personnes autistes. Cet article examine trois questions éthiques fondamentales qui ont émergé de l'étude. Premièrement, l'utilisation d'un diagnostic formel et de l'approbation d'un tuteur légal comme critères d'inclusion peut entraîner l'exclusion injuste des personnes autistes auto-diagnostiquées et de celles qui sont cognitivement capables de consentir et de participer. Deuxièmement, l'adoption d'une approche de recherche participative ne garantit pas en soi la justice participative ; la représentation de groupes divers issus de la communauté doit être assurée. Enfin, considérer le trouble du spectre de l'autisme (TSA) comme un diagnostic médical exige une confidentialité incontestable, ce qui peut entrer en conflit avec le choix personnel de renoncer à l'anonymat et d'être reconnu nominativement. Les chercheurs et les comités d'éthique devraient prendre en compte ces défis éthiques lors de la conduite et de l'examen d'études avec et sur des adultes autistes.

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