The views of the autism community on research data sharing practices

This talk was presented at the University of Manchester Open Research Conference, 9-10 June 2025.

We are interested in how open research practices in the context of Autism research. We conducted interviews with 30 participants including Autistic adults and the parents of Autistic people about data sharing. We identified three key themes: (1) narratives of research: Participants expressed a belief in the neutrality of data and the potential for open data to maximize the value of research, but this was in tension with concerns that open data could be misused to support ableist narratives about autistic people (2) participant vulnerability: limits in understanding about the implications of sharing data and the ways intersectionality influenced participant willingness to share data (3) individuals vs communities: the interaction between the risks and benefits to the individual and community when data about autistic people is made openly available. This work has highlighted that research with marginalised groups such as autistic people may need to adapt how open research methods are used to uphold ethical responsibilities when sharing data. We have developed some suggestions which could be developed further into practical guidelines through co-production with the autistic community.

ASSOCIATED LINK

https://sites.google.com/york.ac.uk/openautismresearch/home?authuser=0