JoAnne O'Rourke



JoAnne McFarland O'Rourke is the Human Subjects Protection Officer at the Inter-university Consortium for Political and Social Research, (ICPSR), Institute for Social Research, University of Michigan. She composed ICPSR's first disclosure review board (DRB) in 2000 for the Substance Abuse and Mental Health Data Archive (SAMHDA) and led the DRB for 11 years. She has led training in disclosure risk identification and mitigation for ICPSR's Collection Development staff, and she led the development of ICPSR's decision rules for assessing disclosure risk for all incoming data collections. Ms. O'Rourke chairs ICPSR's Online Analysis Committee (OAC) and was instrumental in the development of Secure Survey Documentation and Analysis (SSDA), a system that provides online analysis of restricted-use data. She also wrote the user requirements and design for ICPSR's Virtual Data Enclave (VDE), a system providing secure Web access to restricted-use data. Ms. O'Rourke's research interests are in the areas of disclosure risk analysis, human subjects protection and methods of securely providing data access to broad audiences. She led the substance abuse and mental health program at ICPSR for 14 years. She was Principal Investigator of an NICHD-funded survey of NSF and NIH researchers that investigated data sharing practices, knowledge regarding disclosure risk, and practices used to limit risk.