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Alexandra Lautarescu, Brett Trost, Azadeh Kushki, Bethany Oakley, Síofra Heraty, David Belton, Alison Boyle, Sarah Douglas, et al.
(2026).
Autism data sharing: Benefits, challenges, and recommendations.
PLOS Digital Health, 5(3), e0001249.
Public Library of Science (PLoS).
- Publication date
-
2 Mar 2026
- Identifier
-
10.1371/journal.pdig.0001249
- Authors
-
Alexandra Lautarescu,
Brett Trost,
Azadeh Kushki,
Bethany Oakley,
Síofra Heraty,
David Belton,
Alison Boyle,
Sarah Douglas,
Ciara J. Molloy,
Rosemary Holt,
Madeleine Bloomfield,
Florence Campana,
Miro Cupak,
Erica Stevenson,
Julian Tillmann,
Christopher Chatham,
Evdokia Anagnostou,
Dean Hartley,
Tony Charman
- Source
- PLOS Digital Health
- Details
- 5(3), e0001249
- Reference type
- article
- Publisher
- Public Library of Science (PLoS)
- Metadata source
- crossref
Abstract
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.
Study authors in this cited reference