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

Data sharing in child and adolescent psychiatry research: Key challenges (and some potential solutions)
Case Study
Beth Oakley, Alexandra Lautarescu, Tony Charman, Christopher Chatham, Eva Loth, Christian Beckmann, Thomas Bourgeron, Florence Campana, Rosie Holt, Eliza Eaton, Pierre Violland, Katrien Van den Bosch, Siofra Heraty, Scott Wagers, Jan Buitelaar, Declan Murphy, Amy Goodwin, Emily Jones
Open Research Europe, 31 March 2025
Open Access
Abstract
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.