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

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.

Community Brief

Why is this an important issue?

Autism genetics research is often a concern for the Autistic community. Some people worry about how this type of research could be used. There has been a long history of researchers not involving Autistic people in decisions about genetic research. This often means that the research (as well as funding goals for this research) is not aligned with the needs of the community. Listening to Autistic people about genetic research can help ensure this work is ethical, respectful, and helpful for Autistic people.

What was the purpose of this study?

This Australian-based study looked at what Autistic people, their families, and autism professionals think and feel about autism genetics research. The goal was to understand each group’s concerns, hopes, and ideas for improving how this research is done.

What did the researchers do?

The research team worked with Autistic people to design the study. The researchers spoke with 33 participants, including Autistic people, family members, and relevant professionals. Researchers spoke to these groups by conducting interviews, focus groups, and surveys. The team then analyzed the responses to find common themes in what the Autistic and autism communities shared.

What were the results and conclusions of the study?

Many participants were worried about the risks of genetics research. In particular, people were worried about genetic research being used in ways that could harm Autistic people, such as trying to prevent autism. They also felt that the research often focused on “fixing” autism rather than understanding and supporting Autistic people. People said these concerns have led to a lot of mistrust. However, some people believed that genetics research could provide useful health insights if it were done ethically and included Autistic voices from the start. The study highlights the need for researchers to work together with the Autistic community to rebuild trust and ensure that genetics research reflects their needs.

What is new or controversial about these findings?

This study adds to ongoing conversations about the challenges of ethics in autism genetics research. It shows that mistrust stems from a lack of inclusion and consideration of the community’s priorities. It also suggests that while many people are skeptical, there is hope for positive outcomes if researchers take the right approach.

What are potential weaknesses in the study?

This study included a relatively small number of people, all from Australia, which means the results may not reflect everyone’s views, especially those with different lived experiences. However, the results provide valuable insights into the experiences and concerns of those who took part.

How will these findings help Autistic adults now or in the future?

These findings encourage researchers to listen to Autistic people and involve them at every step of the research process. By doing this, future genetics research can focus on improving the lives of Autistic people in ways that are ethical and respectful rather than harmful. This approach could lead to greater trust and research that truly benefits the community.