As new ways of managing personal data emerge, it is vital that children and young people’s interests are fully protected. AYPH’s latest report, Supporting Children and Young People’s Interests within Data Trusts: Lessons from Relevant Frameworks and Roles, explores how data trusts could offer a way forward.
The work is part of the BIS Data Trust project, led by the University of Warwick and funded by the Open Collective Foundation. It reflects growing efforts to find ethical, participatory models for managing young people’s research data. Findings from the Born in Scotland (BIS) pilot study demonstrate that a diverse group—including young people themselves—must be at the centre of developing and governing data trusts.
Our review highlights key elements of existing roles such as Caldicott Guardians, child advocates, and independent mental health advocates to help inform how data trustees could act in young people’s best interests. Key themes include the importance of safeguarding, respecting young people’s evolving capacities, ensuring transparency, and developing age-appropriate ways to engage and communicate.
Crucially, the report highlights that protecting young people’s data is not just a technical task—it is about empowering young people to participate in decisions about their data. Models of direct representation, proxy representation, and ongoing youth engagement are essential tools to make this happen.
With increasing public concern about data use, this work marks an important step towards creating systems that build young people’s trust, protect their rights, and ensure that research benefits young people fairly and safely.
You can read the full report on our resources page.
Author: Kirsty Blenkins, AYPH Evidence & Policy Lead
May 2025