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.
Over the past 20 years, we have seen a significant increase in autism research. However, this increase in research output has not always aligned with research aims and priorities of the Autistic community. Understanding and addressing Autistic people’s concerns around research practice, including the use of brain imaging techniques such as magnetic resonance imaging (MRI) and the use of anonymized databases of brain images that are accessible to researchers, are required to ensure ethical research. Autistic individuals have historically faced medicalized and dehumanizing language by scientific communities, making it essential to prioritize their voices and needs in the research process.
This perspective piece aims to shed light on the ethical complexities surrounding autism research, focusing on the understandable concerns the Autistic community has regarding MRI techniques and publicly accessible brain imaging data. For instance, only some members of the Autistic community can take part in MRI scans due to overwhelming sensory aspects associated with the process. There are also many ways with which anonymized databases of brain images could potentially be misused, or used to harm the Autistic identity, such as conducting research focusing on “treating” autism. By exploring the in-depth perspectives of Autistic individuals, this article seeks to provide recommendations for researchers and clinicians to improve their practices and conduct autism-affirming research.
The authors associated with this perspective piece are members of the Eating Disorders and Autism Collaborative (EDAC) research network, and one of the primary authors of this piece is Autistic, allowing this piece to consider a variety of lived experience and professional perspectives. EDAC conducted workshops with Autistic individuals and professionals to better understand their perspectives firsthand, which led to the generation of quotes for this article.
Existing research has highlighted concerns the Autistic community have regarding the long-term use of their data, as well as how an Autistic experience of an MRI scan significantly differs relative to a non-Autistic experience. Broad concerns have been raised about the ethical implications of research practices, including the potential for data misuse, lack of representation, and medicalization of autism.
The authors recommend several measures to improve MRI research and the use of accessible brain imaging data to make the practice more aligned with the priorities of the Autistic community. Recommendations include reframing research objectives to focus on support rather than treatment, enhancing communication during MRI procedures, and implementing more flexible consent procedures for sharing data.
By adopting these recommended practices, researchers can better respect the autonomy and preferences of Autistic individuals, leading to more inclusive and ethical research outcomes. This will not only aim to currently benefit Autistic individuals by ensuring their voices are heard but also aim to pave the way for more respectful and supportive research practices in the future.
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The article has been submitted solely to Autism in Adulthood.
M.S.: Conceptualization, investigation, writing—original draft, writing—review and editing, visualization, and supervision. E.M.: Conceptualization, investigation, writing—original draft, writing—review and editing, and supervision. G.W.: Writing—review and editing, project administration, and funding acquisition. J.K.-G.: Writing—review and editing. K.T.: Writing—review and editing and funding acquisition. K.G.-S.: Conceptualization and funding acquisition. F.D.: Conceptualization, writing—review and editing, supervision, project administration, and funding acquisition.
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Copyright 2024, Mary Ann Liebert, Inc., publishers.
Published online: 27 November 2024
Eating Disorders and Autism Collaborative (EDAC), University of Edinburgh, Edinburgh, United Kingdom.
School of Health & Social Sciences, University of Edinburgh, Edinburgh, United Kingdom.
School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Aberdeen, United Kingdom.
Eating Disorders and Autism Collaborative (EDAC), University of Edinburgh, Edinburgh, United Kingdom.
Eating Disorders and Autism Collaborative (EDAC), University of Edinburgh, Edinburgh, United Kingdom.
Department of Psychological Medicine, King’s College London, London, United Kingdom.
Eating Disorders and Autism Collaborative (EDAC), University of Edinburgh, Edinburgh, United Kingdom.
Department of Psychological Medicine, King’s College London, London, United Kingdom.
Eating Disorders and Autism Collaborative (EDAC), University of Edinburgh, Edinburgh, United Kingdom.
School of Health & Social Sciences, University of Edinburgh, Edinburgh, United Kingdom.
NHS Lothian Child and Adolescent Mental Health Services, Royal Edinburgh Hospital, Edinburgh, United Kingdom.
These authors contributed equally to this work.
Address correspondence to: Michelle Sader, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Lilian Sutton Building, Foresterhill, Aberdeen AB25 2ZD, United Kingdom of Great Britain and Northern Ireland [email protected]
iORCID ID (https://orcid.org/0000-0002-8068-7337).
iiORCID ID (https://orcid.org/0000-0002-3059-7632).
The authors have no conflicts of interest to report.
M.S., E.M., G.W., K.G.-S., and F.D. are supported by UK Research and Innovation (Medical Research Council [MRC], Economic and Social Research Council [ESRC], Arts and Humanities Research Council [AHRC]), the National Institute for Health and Care Research, and the Medical Research Foundation as part of the EDAC network (grant number: : MR/X03058X/1). K.T. and J.K.-G. are supported by the National Institute for Health and Care Research Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. For the purpose of open access, the authors have applied a Creative Commons Attribution (CC BY) license to any Author Accepted Article version arising from this submission.
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