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Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature

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Abstract

Growth in autism research necessitates corresponding attention to autism research ethics, including ethical and meaningful inclusion of diverse participants. This paper presents the results of a review of research ethics literature, strengthened by consultation with a task force involving autism professionals, family members, and self-advocates on the spectrum. It reviews research ethics concerns around sex and gender; level of support needs; communication modes; race, ethnicity, geography, and language; socioeconomic status; and age. The exclusion of marginalized subgroups of people with autism is a major ethical concern. Researchers can facilitate inclusion by using inclusive terminology, developing accessible communication strategies, or traveling to meet participants. A person-oriented research ethics framework described in this paper structures the advice offered in the literature to create inclusive and supportive research environments.

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Notes

  1. In keeping with the APA guidelines, we use person-first language such as “person with autism” or “person on the autism spectrum” in this manuscript. However, we acknowledge that preferences vary and that many people with autism prefer identity-first language such as “autistic person” (Kenny et al. 2016)

  2. The term “Latinx” has been put forth by intersectional activist communities (particularly Spanish speakers in the United States) as a gender-neutral or non-gendered alternative to “latino” or “latina,” and an alternative to formulations such as “latin@.”

  3. They decided it was permissible for males (all presumed “decisionally impaired”) and that it was permissible for females only when they had legal guardians (not for females without legal guardians).

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Acknowledgments

We acknowledge the invaluable work of the other members of the Autism Research Ethics Task Force: Franco Carnevale, Mathieu Dubois, Bei Evely, Arden C. Fiala, Pascal Franco, Kristian Hooker, Malvina Klag, Annick Lavogiez, Wendy Mitchell, Nancy Noseworthy, Jessica Pigeau, Connie Putterman, Esther Rhee, Margaret Spoelstra, and Zari Yaraghi. Thank you also to the current and former members of the Pragmatic Health Ethics Research Unit for their feedback and contributions, especially to Caitlin Courchesne who designed the website.

Funding

This project was funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (NESIC; Racine co-PI). Dr. Cascio was additionally funded by the Angelo-Pizzagalli Fellowship of the IRCM Foundation and the Social Sciences and Humanities Research Council of Canada’s Banting Postdoctoral Fellowship. Dr. Racine was additionally funded by a Fonds de recherche du Québec – Santé (FRQ-S) senior scholar career award.

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Author notes

  1. M. A. Cascio

    Present address: Central Michigan University College of Medicine, 1280 E. Campus Drive, Mt. Pleasant, MI, 48859, USA

Authors and Affiliations

  1. Institut de recherches cliniques de Montréal, 110 avenue des Pins Ouest, Salle 1535, Montréal, QC, H2W 1R7, Canada

    M. A. Cascio & E. Racine

  2. McGill University, Montréal, Canada

    M. A. Cascio & E. Racine

  3. York University, 230 Behavioural Science Bldg., 4700 Keele Street, Toronto, ON, M3J 1P3, Canada

    J. A. Weiss

  4. Université de Montréal, Montréal, Canada

    E. Racine

Authors
  1. M. A. Cascio
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  2. J. A. Weiss
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  3. E. Racine
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Contributions

ER and JW conceived of the study. MAC designed and supervised the literature review, oversaw website development, coordinated the task force workshop, communicated with community members providing feedback, and supervised the task force report drafting process. ER and JW advised on the literature review design, resolved uncertainties and disagreements about the literature and task force writing process, and participated in drafting the task force report. All authors co-led the task force workshop. ER supervised French translations of materials. All authors participated in the drafting of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to E. Racine.

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Conflict of Interest

The authors declare that they have no conflict of interests. Funding is listed in the section above and advocacy organizations involved in the Task Force are listed in the manuscript.

Ethical Approval

The literature review and task force process did not involve human participants or animals. The interactive portion of the project website, soliciting feedback from the community, was approved by the Research Ethics Boards of the Institut de recherches cliniques de Montréal (reference number 2018–926) and York University (e2018-081).

Informed Consent

No individual participants were included in this study.

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Cascio, M.A., Weiss, J.A. & Racine, E. Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature. Rev J Autism Dev Disord 8, 22–36 (2021). https://doi.org/10.1007/s40489-020-00204-z

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