Pugsley, Kealan; Siryj, Natasha; Alvares, Gail A; Baxter, Emilie; Bellgrove, Mark A; Chau, Tracey; Cooper, Louise; ... Johnson, Beth P; + view all Pugsley, Kealan; Siryj, Natasha; Alvares, Gail A; Baxter, Emilie; Bellgrove, Mark A; Chau, Tracey; Cooper, Louise; Curd, Helen; Douglas, Stacey; Furley, Kirsten; Gordon, Robyn-Leigh; Guastella, Adam J; Hawi, Ziarih; Karo, Amanda; Kerestes, Rebecca; King, Kylie; Poulsen, Rebecca; Rabba, Aspasia Stacey; Rose, Marissa; Teo, Judah PE; Ure, Alexandra; Pellicano, Elizabeth; Johnson, Beth P; - view fewer (2025) "We Need Community-Centred, Strongly Ethical Genetic Research": A Qualitative Investigation of Community Attitudes Toward Autism Genetics. Autism in Adulthood 10.1177/25739581251370568. (In press).

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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.

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