Research Ethics Board/Institutional Review Board Variability and Other Ethical Challenges in Multi-Site Research Involving Participants on the Autism Spectrum

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Salt, M. (2019). Research Ethics Board/Institutional Review Board Variability and Other Ethical Challenges in Multi-Site Research Involving Participants on the Autism Spectrum. In Research Involving Participants with Cognitive Disability and Difference (pp. 77-86). Oxford University PressOxford. https://doi.org/10.1093/oso/9780198824343.003.0007

Publication date: 5 Sep 2019 Added to AutiHub: 29 Sep 2026 Type: Book chapter Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)
  1. Mackenzie Salt *

Abstract

Abstract Doing research at multiple sites can create ethical challenges for researchers, especially those working with vulnerable populations. During the ethical review process, different research ethics boards can disagree on interpretations of research ethics concepts such as capacity to consent, vulnerability, and autonomy. In this chapter, experience in conducting a multi-year, multicentre study involving studying the communication skills of adults with autism is discussed, and the ethical challenges that arose are addressed, focusing on ethical challenges of recruiting participants from multiple sites and detailing interactions with the various research ethics boards involved. Advice and suggestions are provided for other researchers on how to address some of the challenges in doing multicentre research involving participants from vulnerable populations.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 01:01.

Cited references
14
With a DOI
8
Without a DOI, from raw bibliography text
6
1 / 14 (7.1%) cited references include at least one author identified as autistic.
References with data to complete
4 / 14 (28.6%)
References with detected author names
10 / 14 (71.4%)
Without detected author names
4
Without a structured title
2
Without a stable identifier
4
References with raw author names still to review
1
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
21
From DOI or external metadata
21
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
6 / 21 (28.6%) names are linked to an author already present in AutiHub. 15 / 21 (71.4%) names are not yet linked.
Names linked to a person identified as autistic
1 / 21 (4.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 1 / 6 (16.7%). Distinct people identified as autistic: 1 / 18 (5.6%).
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    Type: Article OpenAlex: https://openalex.org/W1829568558
    Crossref OpenAlex
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    Crossref OpenAlex
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    Crossref OpenAlex
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    Type: Other
    Crossref
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    Crossref OpenAlex
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    Type: Other
    Crossref
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    OpenAlex
  10. Morton Ann Gernsbacher (2017). Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma . Journal of Child Psychology and Psychiatry, 58(7), 859-861. Wiley.
    Type: Article DOI: 10.1111/jcpp.12706 OpenAlex: https://openalex.org/W2626162561
    Crossref OpenAlex
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    Type: Other
    Crossref
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    Type: Other
    Crossref
  13. Éric Racine , Dearbhail Bracken‐Roche (2019). Enriching the Concept of Vulnerability in Research Ethics: An Integrative and Functional Account. Bioethics, 33(1), 19-34. Wiley.
    Type: Article DOI: 10.1111/bioe.12471 OpenAlex: https://openalex.org/W2888681580
    Crossref OpenAlex
  14. Yasmin Khaliq (2012). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans .
    Type: Article DOI: 10.1081/e-ecp-120006350 OpenAlex: https://openalex.org/W2949180747
    OpenAlex