Partage des données sur l’autisme : avantages, défis et recommandations

Titre original en anglais : Autism data sharing: Benefits, challenges, and recommendations

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

À propos de la mention auteur·ice autiste

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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. https://doi.org/10.1371/journal.pdig.0001249

Date de publication: 02/03/2026 Ajout dans AutiHub: 12/09/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
19
Auteur·ices de la publication identifié·es comme autistes
1 / 19 (5,3 %)
  1. Alexandra Lautarescu
  2. Brett Trost
  3. Azadeh Kushki
  4. Bethany Oakley
  5. Síofra Heraty
  6. David Belton
  7. Alison Boyle
  1. Sarah Douglas *
  2. Ciara J Molloy
  3. Rosemary Holt
  4. Madeleine Bloomfield
  5. Florence Campana
  6. Miro Cupak
  7. Erica Stevenson
  1. Julian Tillmann
  2. Christopher Chatham
  3. Evdokia Anagnostou
  4. Dean Hartley
  5. Tony Charman

Résumé

Le partage des données est un élément clé de la recherche scientifique, mais il est associé à de nombreux défis juridiques, éthiques et pratiques complexes. Ceux-ci sont particulièrement saillants dans la recherche sur l’autisme, où des préoccupations ont été soulevées concernant les intentions des chercheurs, le fait que les priorités de recherche ne concordent pas avec celles des personnes autistes, ainsi que les divergences d’opinions au sein des communautés de parties prenantes quant aux priorités qui devraient être abordées. Cet article de synthèse a été coproduit au moyen d’un processus collaboratif itératif afin d’intégrer des points de vue divers de représentants des parties prenantes issus du milieu universitaire, d’organisations caritatives, de l’industrie, de la communauté médicale et de la communauté de l’autisme. Nous examinons les principaux avantages et défis du partage des données sur l’autisme et soutenons que les perspectives des personnes autistes doivent être au cœur des discussions sur ses aspects éthiques et technologiques. Nous présentons des recommandations pour des pratiques de partage de données éthiques et responsables et relevons des évolutions majeures dans le domaine, notamment le partage fédéré de données ainsi que les plateformes et registres communautaires.

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.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 12/09/2026 18:20.

Références citées
128
Avec un DOI
77
Sans DOI, à partir du texte brut de la bibliographie
51
12 / 128 (9,4 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
36 / 128 (28,1 %)
Références avec noms d’auteurices détectés
92 / 128 (71,9 %)
Sans nom d’auteurice détecté
36
Sans titre structuré
36
Sans identifiant stable
51
Références avec noms bruts d’auteurices restant à vérifier
36
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
1236
À partir du DOI ou de métadonnées externes
1236
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
40
286 / 1236 (23,1 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 950 / 1236 (76,9 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
61 / 1236 (4,9 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 61 / 286 (21,3 %). Personnes distinctes identifiées comme autistes : 54 / 1125 (4,8 %).
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