Ethical complexities and concerns surrounding magnetic resonance imaging and the open-access scientific framework in autism research

Added on 03/12/2024

Type de contenu

Journal article of the type Perspective ( ; english)

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 published in the journal "Autism in adulthood" Preprint, 9 pages , doi: 10.1089/aut.2024.0184

*One co-author has publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

There is an increasing demand for publicly funded research datasets to be made available for the research community. However, there are multiple issues associated with the use of accessible data, particularly in the Autistic community, where individuals have understandable reservations as to who is accessing these data, what the associated objectives are regarding the use of these data, and why there is insufficient follow-up to individuals who have offered their time to provide their data. These issues particularly extend toward brain imaging research, in which Autistic individuals have expressed long-standing ethical concerns as to how and why this research is performed. This perspective piece aims to outline concerns from the Autistic community in relation to both magnetic resonance imaging (MRI) and the functionality of the open-access scientific framework, utilizing these approaches as examples to outline discipline-wide concerns and barriers to ethical research. This work will also address a bias in research regarding who can reasonably tolerate an MRI scan as an Autistic person and whether certain Autistic characteristics are being disproportionally highlighted and/or suppressed through these research practices. Lastly, this perspective piece will focus on methods with which MRI, open-science philosophy, and general research disciplines can improve practice to conduct ethical autism research.

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