Partage de données dans la recherche en psychiatrie de l’enfant et de l’adolescent : principaux défis (et quelques solutions potentielles)

Titre original en anglais : Data sharing in child and adolescent psychiatry research: Key challenges (and some potential solutions)

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Oakley, B., Lautarescu, A., Charman, T., Chatham, C., Loth, E., Beckmann, C., Bourgeron, T., Campana, F., Holt, R. J., Eaton, E., Violland, P., Van den Bosch, K., Heraty, S., Wagers, S., Buitelaar, J. K., Murphy, D., Goodwin, A., Jones, E., & Group, T. A. L. (2025). Data sharing in child and adolescent psychiatry research: Key challenges (and some potential solutions). Open Research Europe, 5, 93. https://doi.org/10.12688/openreseurope.18147.1

Date de publication: 31/03/2025 Ajout dans AutiHub: 24/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
19
Auteur·ices de la publication identifié·es comme autistes
1 / 19 (5,3 %)
  1. Bethany Oakley
  2. Alexandra Lautarescu
  3. Tony Charman
  4. Christopher Chatham
  5. Eva Loth
  6. Christian Beckmann
  7. Thomas Bourgeron
  1. Florence Campana
  2. R. J. Holt
  3. Eliza Eaton *
  4. Pierre Violland
  5. Katrien Van den Bosch
  6. Siofra Heraty
  7. Scott Wagers
  1. Jan K. Buitelaar
  2. Declan Murphy
  3. Amy Goodwin
  4. Emily Jones
  5. The AIMS LEAP Group

Résumé

Contexte Le domaine de la recherche biomédicale entre dans une nouvelle ère, dans laquelle le partage public des données devient de plus en plus la norme. Adhérer aux initiatives de partage de données présente de nombreux avantages, notamment faire face à la crise de la réplication grâce à une transparence accrue et à la publication de résultats nuls, faciliter les collaborations mondiales afin d’accélérer les progrès de la recherche, améliorer le rapport coût-efficacité en réduisant la duplication des efforts, et rendre les avancées scientifiques plus accessibles au public. Cependant, plusieurs défis éthiques et logistiques cruciaux doivent également être relevés afin de maximiser les bénéfices du partage de données et de minimiser les risques. Les risques potentiels, et de plus en plus reconnus, d’un partage non réglementé des données (par exemple, la réidentification des données, leur utilisation abusive et le manque de représentativité dû à la variabilité des personnes qui acceptent de partager des données) ont également été illustrés par des violations de données très médiatisées et entrent directement en conflit avec les efforts visant à rendre la recherche plus robuste, accessible et mondiale. Méthodes/Résultats Nous présentons ici, sous forme narrative, les défis actuels du partage de données du point de vue de la psychiatrie de l’enfant et de l’adolescent, un domaine dans lequel ils peuvent être particulièrement aigus. Par exemple, la recherche portant sur les enfants et les jeunes adolescents exige souvent que les personnes qui s’occupent d’eux donnent leur consentement au nom d’un mineur, ce qui accroît la responsabilité des chercheurs de considérer comment la science d’aujourd’hui pourrait évoluer à l’avenir, lorsque ces personnes ne seront plus mineures. Nous utilisons les données de notre consortium de recherche Autism Innovative Medicines Study - 2 - Trials (AIMS-2-TRIALS; https://www.aims-2-trials.eu/) afin d’illustrer les points soulevés dans cet article de perspective. Conclusions Nous proposons également quelques solutions potentielles pour commencer à relever les défis actuels du partage de données, en nous concentrant sur des priorités essentielles, notamment le contrôle partagé de la curation des données entre les communautés de chercheurs et de participants, ainsi que l’équité d’accès des groupes de recherche aux outils et aux ressources nécessaires pour mener un partage de données responsable et durable.

Background The field of biomedical research is entering a new era, in which public data sharing is increasingly the norm. There are many advantages of embracing data sharing initiatives, including tackling the replication crisis through enhanced transparency and publication of null findings, facilitating global collaborations to accelerate research progress, enhancing cost-effectiveness by reducing duplication of efforts, and making scientific advances more accessible to the public. However, there are also several crucial ethical and logistical challenges that must be addressed to maximise the benefits of data sharing and minimise risks. The potential, and increasingly recognised, risks of unregulated data sharing (e.g., data reidentification, misuse, and lack of representativeness due to variability in who agrees to share data) have also been exemplified by high profile data breaches and directly clash with efforts to make research more robust, accessible, and global. Methods/Results Here, we narratively outline current challenges for data sharing from the perspective of child and adolescent psychiatry, one area where they may be particularly acute. For example, child and early adolescent research often requires caregivers to consent on behalf of a minor – increasing the responsibility of researchers to consider how the science of today may evolve into the future (when those individuals are no longer minors). We use data from our research consortium Autism Innovative Medicines Study - 2 - Trials (AIMS-2-TRIALS; https://www.aims-2-trials.eu/ ) to illustrate the points raised in this perspective piece. Conclusions We also propose some potential solutions to begin to address current challenges for data sharing, focusing on key priorities, including shared control of data curation between researcher and participant communities and equity of access by research groups to the tools and resources needed to conduct responsible and sustainable data sharing.

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Références citées
77
Avec un DOI
73
Sans DOI, à partir du texte brut de la bibliographie
4
0 / 77 (0,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
2 / 77 (2,6 %)
Références avec noms d’auteurices détectés
75 / 77 (97,4 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
0
Sans identifiant stable
3
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
1114
À partir du DOI ou de métadonnées externes
1114
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
0
91 / 1114 (8,2 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 1023 / 1114 (91,8 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
0 / 1114 (0,0 %)
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 : 0 / 91 (0,0 %). Personnes distinctes identifiées comme autistes : 0 / 994 (0,0 %).
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