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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
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.
Keywords: Autism, Co-Productive, Genetic,s Genomics, Qualitative, Spectrum 10K
College: Faculty of Medicine, Health and Life Sciences
Funders: Wellcome Trust

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