I lead the Research Governance and Ethics group at Sage Bionetworks. The group develops and pilots data sharing models and tools to enable open research collaborations. In my work, I help research participants and researchers determine the appropriate governance approach to contribute, collect, access, and share research data responsibly. It starts with research participants. I design eConsent experiences to better inform participants about the risks and benefits of participating in research. I explain the real-world implication of big data analysis, comprehensive data linkage, and the impact on their privacy. I am particularly interested in developing new eConsent to support the autonomous decision of populations with a wide range of memory and cognitive ability. I also help researchers determine the governance conditions that enable them to work collaboratively and comply with ethical and regulatory requirements. I co-chair the Governance Working Group of the (exceptional) National COVID Cohort Collaborative initiative (N3C), to enable dozens of institutions to responsibly share clinical data for urgent COVID-related research.
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