“We Need Community-Centred, Strongly Ethical Genetic Research”: A Qualitative Investigation of Community Attitudes Toward Autism Genetics

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Pugsley, K., Siryj, N., Alvares, G. A., Baxter, E., Bellgrove, M. A., Chau, T., Cooper, L., Curd, H., Douglas, S., Furley, K., Gordon, R. L., Guastella, A. J., Hawi, Z., Karo, A., Kerestes, R., King, K., Poulsen, R. E., Rabba, A. S., Rose, M.,..., & Johnson, B. P. (2026). “We Need Community-Centred, Strongly Ethical Genetic Research”: A Qualitative Investigation of Community Attitudes Toward Autism Genetics. Autism in Adulthood. https://doi.org/10.1177/25739581251370568

Publication date: 2 Feb 2026 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
23
Publication authors identified as autistic
1 / 23 (4.3%)
  1. Kealan Pugsley
  2. Natasha Siryj
  3. Gail A Alvares
  4. Emilie Baxter
  5. Mark A. Bellgrove
  6. Tracey Chau
  7. Louise Cooper
  8. Helen Curd
  1. Stacey Douglas
  2. Kirsten Furley
  3. Robyn-Leigh Gordon
  4. Adam J. Guastella
  5. Ziarih Hawi
  6. Amanda Karo
  7. Rebecca Kerestes
  8. Kylie King
  1. Rebecca E. Poulsen *
  2. Aspasia Stacey Rabba
  3. Marissa Rose
  4. Judah P.E. Teo
  5. Alexandra Ure
  6. Elizabeth Pellicano
  7. Beth P. Johnson

Abstract

Background: Autism genetics has historically attracted a substantial proportion of autism research funding internationally. However, more recently, several controversies centered on ethical conduct and lack of community consultation have emerged. This has triggered Autistic-led protests for the functional and meaningful inclusion of Autistic voices in the research design. Methods: We collaborated with Autistic people, their allies, and other stakeholders concerned with Autistic outcomes to cocreate a qualitative study investigating individuals’ perceptions of autism genetics. We spoke to 33 Australian Autistic people, their families and supporters, and autism professionals in a series of codesigned semi-structured interviews ( n = 20), focus groups ( n = 2 groups), and qualitative surveys ( n = 7). Interviewees were predominantly women (79%), White (67%), held postgraduate qualifications (i.e., master’s, doctorate) (36%), and received their autism diagnosis or self-diagnosed in adulthood (where applicable, 93%). Many interviewees held multiple intersecting roles across the Autistic and autism communities. We transcribed their data verbatim and analyzed these within a critical realist framework using reflexive thematic analysis. Results: Community members reported concerns about the eugenic potential of genetics research and how it perpetuates negative attitudes about autism and Autistic people. Interviewees felt a sense of disillusionment and distrust toward the field stemming from persistent failure of autism researchers to integrate community needs within its aims. Some believed that while genetics knowledge could hold health benefits for the Autistic community, these could only be achieved through trust-building and improved engagement of Autistic voices in this research. Conclusion: Findings highlight the diverse community perspectives on autism genetics research within Australia, capturing how genetic studies are perceived to ignore the wants, needs, and priorities of Autistic people and their supporters. These insights offer a unique opportunity to reevaluate the trajectory of autism genetics research into the future, with a strong call to action from participants to embed Autistic voices in a functionally meaningful way at all levels and stages of knowledge generation.

Bibliography cited by this reference

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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 17:07.

Cited references
76
With a DOI
60
Without a DOI, from raw bibliography text
16
15 / 76 (19.7%) cited references include at least one author identified as autistic.
References with data to complete
8 / 76 (10.5%)
References with detected author names
68 / 76 (89.5%)
Without detected author names
8
Without a structured title
8
Without a stable identifier
16
References with raw author names still to review
8
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
576
From DOI or external metadata
576
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
161 / 576 (28.0%) names are linked to an author already present in AutiHub. 415 / 576 (72.0%) names are not yet linked.
Names linked to a person identified as autistic
36 / 576 (6.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 36 / 161 (22.4%). Distinct people identified as autistic: 25 / 483 (5.2%).
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