Perspectives of Autistic Adults and Parents on Open Data Practices in Autism Research

Researchers conducted 30 interviews with autistic adults and parents of autistic individuals to gather their views on open data practices in autism research. The participants acknowledged potential benefits of open data, such as improving services and knowledge generation, but expressed concerns about misuse, re-identification, and interpretations leading to harmful narratives. Most participants preferred restricted access models over fully open data, highlighting the importance of engaging with participant communities to ensure ethical and transparent open data practices.

Key Takeaways:

• 30 interviews were conducted with autistic adults and parents of autistic individuals to examine their views on open data practices in autism research.
• Participants acknowledged potential benefits of open data, including improving services and knowledge generation.
• However, they expressed concerns about misuse, re-identification, and interpretations leading to harmful narratives.
• Most participants (80%) preferred restricted access models over fully open data.
• The findings emphasize the need for meaningful engagement with participant communities to ensure ethical and transparent open data practices.
• The research aims to inform decision-making on open data practices not only for autism researchers but also for others working with marginalized populations.
• The study highlights the importance of considering power dynamics in discussions around open data and the need for more inclusive approaches.

Statistics:

• 30 interviews were conducted with autistic adults and parents of autistic individuals.
• 80% of participants preferred restricted access models over fully open data.
• The research aims to inform decision-making on open data practices for both autism researchers and others working with marginalized populations.

Sources:

• osf.io/preprints/metaarxiv/7djhq_v1/ (preprint abstract)