Autism data sharing: Benefits, challenges, and recommendations

Data sharing is a key element of scientific research, but it is associated with many complex legal, ethical, and practical challenges. These are particularly salient in autism research, where concerns have been raised about researchers’ intentions, research priorities not aligning with those of autistic people, and differing opinions within stakeholder communities as to what priorities should be addressed. This review paper was co-produced through an iterative collaborative process to incorporate diverse viewpoints of stakeholder representatives from academia, charity, industry, the medical community, and the autism community. We discuss the main benefits and challenges of autism data sharing and argue that the perspectives of autistic people must be central to discussions around its ethical and technological aspects. We outline recommendations for ethical and responsible data sharing practices and note key developments within the field, including federated data sharing and community platforms and registries.Author summary: Data sharing is becoming more important in scientific research. Larger datasets enable more detailed and accurate information to be analysed and can lead to better collaboration among researchers. In this review, we look at the main benefits and challenges of data sharing in autism research, where people have raised concerns around data sharing. We discuss the importance of including autistic people in all discussions about data sharing. Based on discussions between representatives from different stakeholder communities, we recommend practices that could make data sharing more ethical and responsible. We conclude the review by outlining recent developments in this area and discussing their potential implications for autism data sharing.