Governance and Privacy in a Provincial Data Repository - A Cross-sectional Analysis of Longitudinal Birth Cohort Parent Participants' Perspectives on Sharing Adult Vs. Child Research Data

Research data abound and are increasingly shared through a variety of platforms, such as biobanks for precision health and data repositories for reuse of research and administrative data. Data sharing presents great opportunities as well as significant ethical and legal concerns, such as privacy, consent, governance, access, and communication. Respectful data governance calls for stakeholder engagement during platform development. This stakeholder-engagement study used a web-based survey to capture the views of research participants about governance strategies for secondary data use. Survey response rate was 60.8% (n = 346). Parents’ primary concern was ensuring appropriate data re-use of data, even over privacy. Appropriate re-use included project-specific access and limiting access to researchers with more-trusted affiliations like academia. Other affiliations (e.g. industry, government and not-for-profit) were less palatable. Parents considered pediatric data more sensitive than adult data and expressed more reluctance towards sharing child identifiers compared to their own (p-value<0.001). This study stresses the importance of repository governance strategies to sustain long-term access to valuable data assets via large-scale repository.