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An investigation of autistic opinions about autism-related genomic research

Rebecca Ellis Orcid Logo, Kathryn Asbury

Neurodiversity, Volume: 2

Swansea University Author: Rebecca Ellis Orcid Logo

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DOI (Published version): 10.1177/27546330241287317

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...

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Published in: Neurodiversity
ISSN: 2754-6330 2754-6330
Published: SAGE Publications 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa67661
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spelling 2024-10-24T15:56:16.6313729 v2 67661 2024-09-12 An investigation of autistic opinions about autism-related genomic research 8ea1fbb848d05d2f0262c6d03cfc9698 0000-0002-7761-468X Rebecca Ellis Rebecca Ellis true false 2024-09-12 HSOC 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. Journal Article Neurodiversity 2 SAGE Publications 2754-6330 2754-6330 Autism, Co-Productive, Genetic,s Genomics, Qualitative, Spectrum 10K 13 10 2024 2024-10-13 10.1177/27546330241287317 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) Wellcome Trust 2024-10-24T15:56:16.6313729 2024-09-12T12:55:55.1492429 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Rebecca Ellis 0000-0002-7761-468X 1 Kathryn Asbury 2 67661__32708__913665f399ec4d0091aef45a1f31f916.pdf 67661.VoR.pdf 2024-10-24T15:54:52.5046848 Output 287722 application/pdf Version of Record true © The Author(s) 2024. This article is distributed under the terms of the Creative Commons Attribution 4.0 License. true eng https://creativecommons.org/licenses/by/4.0/
title An investigation of autistic opinions about autism-related genomic research
spellingShingle An investigation of autistic opinions about autism-related genomic research
Rebecca Ellis
title_short An investigation of autistic opinions about autism-related genomic research
title_full An investigation of autistic opinions about autism-related genomic research
title_fullStr An investigation of autistic opinions about autism-related genomic research
title_full_unstemmed An investigation of autistic opinions about autism-related genomic research
title_sort An investigation of autistic opinions about autism-related genomic research
author_id_str_mv 8ea1fbb848d05d2f0262c6d03cfc9698
author_id_fullname_str_mv 8ea1fbb848d05d2f0262c6d03cfc9698_***_Rebecca Ellis
author Rebecca Ellis
author2 Rebecca Ellis
Kathryn Asbury
format Journal article
container_title Neurodiversity
container_volume 2
publishDate 2024
institution Swansea University
issn 2754-6330
2754-6330
doi_str_mv 10.1177/27546330241287317
publisher SAGE Publications
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
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description 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.
published_date 2024-10-13T14:36:41Z
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