Children and young people broadly support health data research—but want safeguards
Children and young people broadly support the use of health data for research that could improve lives, but they want strong safeguards, transparency and greater involvement in decisions about how their information is used, a review led by researchers at the University of Cambridge has found.
A recent review led by researchers at the University of Cambridge has found that both children and young people, along with their parents and caregivers, generally support the use of health data for research that could improve lives. However, they want robust safeguards, transparency, and greater involvement in decisions regarding how their information is used.
The team analyzed evidence from 17 studies involving over 4,700 children and young people, as well as nearly 1,500 parents and caregivers. While overall support for health data research was strong, participants were concerned about privacy, potential misuse of data, and the lack of control over how their information is utilized.
Young people specifically expressed a desire for more involvement in decisions about their data as they mature. Researchers emphasize the importance of trust, transparency, and clear communication about data use to ensure that big data in children's healthcare research aligns with the expectations and needs of young participants and their families.
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