Children and young people can support health-data research while placing conditions on how their information is used. A new review finds that trust, public benefit, privacy and control matter together. Its findings do not establish a universal permission to reuse children’s records. Original review
For researchers and healthcare organisations, the useful question is more precise than whether young people are “for” or “against” data sharing: which uses do they consider acceptable, who has been asked, and whose perspective is still missing?
What the review brought together
The PLOS Digital Health paper, published on 15 October 2026, synthesised 17 studies with 6,261 participants. These included at least 4,710 children and young people and 1,443 parents or carers; one study did not separate its participant total by group. Those are counts of represented perspectives, not votes in one survey. Methods and study characteristics
The authors used a mixed-methods narrative synthesis. Studies covered different settings, ages and forms of data, including records, biobanks and digital-device information. A willingness percentage from one context would not automatically describe another, which is why there is no single pooled approval rate here.
Support depends on the purpose and the people using data
The review describes broadly favourable but conditional attitudes. Participants saw possible benefits to other people and future care, while raising concerns about identification, misuse, commercial exploitation and unclear governance. Trust concerned who would use information and for what purpose, rather than data security alone. Findings and synthesis
This distinction matters when explaining a project. “Research” is a broad label; it does not tell a family which information will be used, which organisations can access it or how decisions will be made. A promise of public benefit and an account of actual governance need to be understood together.
Whose support has actually been studied?
Fourteen of the 17 studies were from Anglophone high-income settings. Evidence was especially sparse for several underserved groups and younger children. The authors also identify differences in study quality and how data-driven research was described. These limits prevent treating the synthesis as the voice of every child. Review limitations
A parent’s view can be important without replacing the child’s own. Equally, counting people whose records appear in a dataset is different from involving them in decisions about its use. The review’s contribution is to expose those distinctions and the gaps in representation.
Involvement is more than a clearer information sheet
UKRI’s current guidance expects age-appropriate information and opportunities for children to influence research through co-production and public involvement. It also describes research with children as a partnership with children and families. This is UK funder guidance, separately attributed from the international attitudes review. UKRI guidance
HDR UK describes public involvement as a way for people to help shape health-data research and its decisions. Asking for views after every important choice has already been made is a different role from contributing to those choices. HDR UK’s involvement approach
The review is evidence about perspectives, not a legal-consent rule or a compliance assessment. Direct-care record access remains a separate question. For research reuse, the unresolved work is to explain the specific project, provide meaningful involvement and recognise whose views the available evidence cannot represent.