Raisonnable pour qui ? Repenser les informations communiquées lors du consentement éclairé à la lumière des préoccupations de la communauté autiste liées à la recherche

Titre original en anglais : Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Khatiwada, M., Howard, D., Krempley, T., Walton, K., Williams, C., & Graber, A. D. (2026). Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community. The American Journal of Bioethics, 26(10), 16-29. https://doi.org/10.1080/15265161.2026.2632012

Titre de la revue ou du livre
The American Journal of Bioethics
Éditeur
Informa UK Limited
Volume
26
Numéro
10
Pages
16-29
Date de publication: 02/03/2026 Ajout dans AutiHub: 21/09/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Manisha Khatiwada
  2. Dana Howard
  3. Tema Krempley *
  1. Katherine Walton
  2. Crystal Williams
  3. Abraham David Graber

Résumé

La communication d'informations au cours du processus de consentement éclairé pose un dilemme. Si trop peu d'informations sont présentées, les participants ne sont pas en mesure de prendre une décision éclairée. Une communication exhaustive est toutefois pratiquement impossible. Aux États-Unis, ce dilemme a historiquement été abordé dans le contexte de la recherche en exigeant que les informations communiquées comprennent des éléments énumérés : l'objectif de la recherche, les risques potentiels, etc. En 2018, les lignes directrices fédérales ont été mises à jour afin d'exiger que les informations communiquées respectent la norme de la personne raisonnable, selon laquelle les participants doivent recevoir toutes les informations qu'une personne « moyenne » souhaiterait connaître. En nous appuyant sur les préoccupations propres à la communauté autiste concernant la recherche, nous soutenons que, du fait de l'accent mis sur les souhaits informationnels de la personne « moyenne », la norme de la personne raisonnable ne répond systématiquement pas aux besoins informationnels de nombreuses personnes issues de populations minorisées. Nous plaidons en faveur d'une compréhension individualisée de la norme de la personne raisonnable et formulons des recommandations à l'intention des équipes de recherche.

Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in the research context by requiring that disclosure include enumerated items: the purpose of the research, potential risks, etc. In 2018, federal guidelines were updated to require that disclosure adhere to the reasonable person standard, whereby participants must be given all information that an "average" person would want to know. Drawing on the Autistic community's unique concerns regarding research, we argue that, because of its emphasis on the informational wants of the "average" person, the reasonable person standard systematically fails to meet the informational needs of (many) people from minoritized populations. We argue for an individualized understanding of the reasonable person standard and provide recommendations for research teams.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 03/10/2026 08:20.

Références citées
106
Avec un DOI
73
Sans DOI, à partir du texte brut de la bibliographie
33
13 / 106 (12,3 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
21 / 106 (19,8 %)
Références avec noms d’auteurices détectés
85 / 106 (80,2 %)
Sans nom d’auteurice détecté
21
Sans titre structuré
21
Sans identifiant stable
33
Références avec noms bruts d’auteurices restant à vérifier
21
Références avec problème de récupération des métadonnées externes
1
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
264
À partir du DOI ou de métadonnées externes
264
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
21
73 / 264 (27,7 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 191 / 264 (72,3 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
18 / 264 (6,8 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 18 / 73 (24,7 %). Personnes distinctes identifiées comme autistes : 16 / 252 (6,3 %).
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