Autism data sharing: Benefits, challenges, and recommendations

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

doi:10.1371/journal.pdig.0001249

Autism data sharing: Benefits, challenges, and recommendations

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

Department of Psychology
King's College London
Department of Forensic and Neurodevelopmental Sciences
The Royal Belfast Hospital for Sick Children
Holland Bloorview Kids Rehabilitation Hospital
University of London
University of Cambridge
Department of Psychological Medicine
Institut Pasteur
DNAstack
Province of Ontario Neurodevelopmental Network Autism Representative
F. Hoffmann-La Roche AG
Autism Speaks

Research output: Contribution to journal › Review article › peer-review

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.

Original language	English
Article number	e0001249
Pages (from-to)	e0001249
Journal	PLOS digital health
Volume	5
Issue number	3
DOIs	https://doi.org/10.1371/journal.pdig.0001249
Publication status	Published - 2 Mar 2026

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https://journals.plos.org/digitalhealth/article?id=10.1371/journal.pdig.0001249Licence: CC BY

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Lautarescu, A., Trost, B., Kushki, A., Oakley, B., Heraty, S., Belton, D., Boyle, A., Douglas, S., Molloy, C. J., Holt, R., Bloomfield, M., Campana, F., Cupak, M., Stevenson, E., Tillmann, J., Chatham, C., Anagnostou, E., Hartley, D., & Charman, T. (2026). Autism data sharing: Benefits, challenges, and recommendations. PLOS digital health, 5(3), e0001249. Article e0001249. https://doi.org/10.1371/journal.pdig.0001249

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title = "Autism data sharing: Benefits, challenges, and recommendations",

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.",

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Lautarescu, A, Trost, B, Kushki, A, Oakley, B, Heraty, S, Belton, D, Boyle, A, Douglas, S, Molloy, CJ, Holt, R, Bloomfield, M, Campana, F, Cupak, M, Stevenson, E, Tillmann, J, Chatham, C, Anagnostou, E, Hartley, D & Charman, T 2026, 'Autism data sharing: Benefits, challenges, and recommendations', PLOS digital health, vol. 5, no. 3, e0001249, pp. e0001249. https://doi.org/10.1371/journal.pdig.0001249

TY - JOUR

T1 - Autism data sharing

T2 - Benefits, challenges, and recommendations

AU - Lautarescu, Alexandra

AU - Trost, Brett

AU - Kushki, Azadeh

AU - Oakley, Bethany

AU - Heraty, Síofra

AU - Belton, David

AU - Boyle, Alison

AU - Douglas, Sarah

AU - Molloy, Ciara J

AU - Holt, Rosemary

AU - Bloomfield, Madeleine

AU - Campana, Florence

AU - Cupak, Miro

AU - Stevenson, Erica

AU - Tillmann, Julian

AU - Chatham, Christopher

AU - Anagnostou, Evdokia

AU - Hartley, Dean

AU - Charman, Tony

N1 - Copyright: © 2026 Lautarescu et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

PY - 2026/3/2

Y1 - 2026/3/2

N2 - 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.

AB - 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.

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Autism data sharing: Benefits, challenges, and recommendations

Abstract

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