Children broadly support health data research with safeguards
Researchers at the University of Cambridge conducted a systematic review of 17 studies involving 6,261 participants—including at least 4,710 children and young people and 1,443 parents and carers—on attitudes toward using health data in children's healthcare research. The review found that children, young people, parents, and carers broadly supported health data research where there was a clear potential benefit, but support was conditional on data being used ethically by trustworthy organizations with appropriate safeguards and transparency. Participants expressed concerns about privacy loss, potential identification even when data are anonymized, and misuse by commercial companies, and they wanted greater involvement in decisions about their data as they matured. The findings, published in PLOS Digital Health, suggest that building trust and transparency—such as making clearer to participants how their data are being used and governed—will be important as healthcare research continues to expand its use of data.
