An investigation of autistic opinions about autism-related genomic research

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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Ellis, R. & Asbury, K. (2024). An investigation of autistic opinions about autism-related genomic research. Neurodiversity, 2. https://doi.org/10.1177/27546330241287317

Publication date: 1 Jan 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Rebecca Ellis *
  2. Kathryn Asbury

Abstract

Genomic studies of autism are a heavily debated, often controversial, topic within the autism community. Autistic voices have historically been poorly represented within research which concerns them directly. Although recent efforts have been made to involve the voices of those with lived experience, there is a dearth of knowledge of Autistic opinions of genomic autism studies. This study sought to address this. This research has collected the views and opinions of late-diagnosed Autistic adults on genomic research as part of the PEAPOD (Personal Experiences of Autism and Perceptions Of DNA-based research) study. It consisted of 20 semi-structured interviews with Autistic adults residing in the UK, conducted by an Autistic researcher. The study used multiple data collection methods including using video conferencing software and social media messaging. Interviews were transcribed and thematically analysed. Four themes were identified including a diverse understanding of genomic research, what is genomic research seeking to achieve? who is doing what? (and for whom?), and reflecting on the Autistic voice. We conclude more is needed to address the concerns of the Autistic community surrounding genomic studies and suggest recommendations for how this can be achieved.

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 08:01.

Cited references
56
With a DOI
38
Without a DOI, from raw bibliography text
18
17 / 56 (30.4%) cited references include at least one author identified as autistic.
References with data to complete
19 / 56 (33.9%)
References with detected author names
43 / 56 (76.8%)
Without detected author names
13
Without a structured title
17
Without a stable identifier
18
References with raw author names still to review
11
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
141
From DOI or external metadata
141
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
11
95 / 141 (67.4%) names are linked to an author already present in AutiHub. 46 / 141 (32.6%) names are not yet linked.
Names linked to a person identified as autistic
40 / 141 (28.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 40 / 95 (42.1%). Distinct people identified as autistic: 31 / 121 (25.6%).
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