Parental perspectives on consent for participation in large-scale, non-biological data repositories.

Background: Data sharing presents several challenges to the informed consent process. Unique challenges emerge when sharing pediatric or pregnancy-related data. Here, parent preferences for sharing non-biological data are examined.

Parent perspectives on privacy and governance for a pediatric repository of non-biological, research data.

Research data repositories (RDRs) are data storage entities where data can be submitted, stored, and subsequently accessed for purposes beyond the original intent. There is little information relating to non-biological RDRs, nor considerations regarding pediatric data storage and re-use. We examined parent perspectives on pediatric, non-biological RDRs.