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Autistic perspectives on the moral and ethical considerations of genetic testing for autism

European Journal of Human Genetics volume 33, pages 1316–1323 (2025)Cite this article

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Abstract

This study aimed to characterize the nuanced perspectives expressed by Autistic adults about genetic testing for autism. In this secondary analysis of an existing dataset, we used inductive content analysis of free-text responses that Autistic adults wrote in response to questions asking about perceptions of genetic testing for autism that had been included in a previous survey. Participants who completed the survey had been recruited online. Three-hundred eighty-nine participants wrote a total of 28,774 words in response to the questions of interest. While some respondents wrote about potential benefits of genetic testing (79/389), more (333/389) wrote about potential negative outcomes of genetic testing. Participants wrote about concerns of eugenics (281/389), described a lack of trust in how genetics information would be used (125/389), and raised concerns that genetic testing could increase discrimination (66/389). This is the largest study to date to conduct an in-depth analysis of Autistic adults’ opinions on genetic testing for autism. Most respondents raised serious concerns. Additional work is needed to collect more Autistic opinions about genetic testing for autism.

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Data are available from the corresponding author on reasonable request.

Code availability

The data generated and analysed during this study are available from the corresponding author on reasonable request.

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Acknowledgements

JA was supported by BC Mental Health and Substance Use Services. The authors offer gratitude to the Coast Salish Peoples, including the xʷməθkwəy̓əm (Musqueam), Skwxwú7mesh (Squamish), and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) Nations, on whose traditional, unceded and ancestral territory we have the privilege of working. We acknowledge that our efforts in reconciliation and repatriation need to go far beyond land acknowledgements and we hold ourselves publicly accountable to learning and doing as much as we can to support efforts in returning the land to its rightful custodians. JA and LB thank the members of the Translational Genetics Research Collaborative for their varied support.

Funding

This research did not have funding support.

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Author notes

  1. These authors contributed equally: Mitch Hendry, Loryn Byres.

Authors and Affiliations

  1. Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada

    Mitch Hendry & Jehannine Austin

  2. Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada

    Loryn Byres & Jehannine Austin

Authors
  1. Mitch Hendry
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  2. Loryn Byres
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  3. Jehannine Austin
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Contributions

All authors contributed to the intellectual design, the drafting, revision, and final approval of the manuscript.

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Correspondence to Jehannine Austin.

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Competing interests

MH, LB, and JA declare that they have no conflicts of interest.

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This study was approved by the BC Children and Women’s Research Ethics Board (H21-01937). All participants provided informed consent.

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Hendry, M., Byres, L. & Austin, J. Autistic perspectives on the moral and ethical considerations of genetic testing for autism. Eur J Hum Genet 33, 1316–1323 (2025). https://doi.org/10.1038/s41431-025-01862-5

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