An investigation of autistic opinions about autism-related genomic research

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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
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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.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
56
Total cited references integrated for this publication.
Cited references with an identified autistic author
16 / 56 (28.6%)
Cited author occurrences identified as autistic
31 / 141 (22.0%)
Among occurrences linked to AutiHub author records: 31 / 87 (35.6%). Distinct cited authors identified as autistic: 22 / 121 (18.2%).
Cited author occurrences linked to AutiHub author records
87 / 141 (61.7%)
Distinct linked cited authors: 67 / 121 (55.4%)
Linked cited-author occurrences not identified as autistic
56 / 87 (64.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 56 / 141 (39.7%). Distinct linked cited authors not identified as autistic: 45 / 67 (67.2%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (1) · DataCite: not found (1)
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