Complexités éthiques et préoccupations liées à l'imagerie par résonance magnétique et au cadre scientifique en accès libre dans la recherche sur l'autisme

Ajouté le 03/12/2024

Type de contenu

Article de revue du type Perspective ( ; anglais)

Michelle Sader , Ellen Maloney * , Gordon Waiter , Jess Kerr-Gaffney , Kate Tchanturia , Karri Gillespie-Smith , Fiona Duffy
Ethical complexities and concerns surrounding magnetic resonance imaging and the open-access scientific framework in autism research publié dans la revue "Autism in adulthood" Preprint, 9 pages , doi: 10.1089/aut.2024.0184

*Un.e co-auteur·rice s'est publiquement identifié·e comme autiste. [En savoir plus sur cette mention]

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Résumé/Présentation

Il existe une demande croissante pour que les ensembles de données de recherche financés par des fonds publics soient mis à la disposition de la communauté scientifique. Cependant, l'utilisation de données accessibles soulève de nombreuses problématiques, notamment au sein de la communauté autiste, où les individus expriment des réserves légitimes quant à qui accède à ces données, quels sont les objectifs associés à leur utilisation et pourquoi il y a un suivi insuffisant auprès des personnes qui ont consacré du temps à fournir leurs données. Ces questions concernent particulièrement la recherche en imagerie cérébrale, dans laquelle les individus autistes ont exprimé de longue date des préoccupations éthiques sur la manière et les raisons pour lesquelles ces recherches sont menées. Cet article de perspective vise à exposer les préoccupations de la communauté autiste concernant à la fois l'imagerie par résonance magnétique (IRM) et le fonctionnement du cadre scientifique en accès libre, en utilisant ces approches comme exemples pour mettre en évidence les préoccupations et les obstacles éthiques à l'échelle de la discipline. Ce travail abordera également un biais dans la recherche concernant la capacité des personnes autistes à tolérer raisonnablement une IRM et si certaines caractéristiques de l'autisme sont mises en avant ou au contraire occultées de manière disproportionnée par ces pratiques de recherche. Enfin, cet article se concentrera sur les méthodes par lesquelles l'IRM, la philosophie de la science ouverte et les disciplines de recherche en général peuvent améliorer leurs pratiques pour mener des recherches éthiques sur l'autisme.

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

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

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