Integrating Approaches to Privacy across the Research Lifecycle: Long-term Longitudinal Studies

Organization: Berkman Center for Internet and Society
Author: Alexandra Wood, David R. O'Brien, Micah Altman, Alan F. Karr, Urs Gasser, Michael Bar-Sinai, Kobbi Nissim, Jonathan Ullman, Salil Vadhan, Michael Wojcik
Published: July 22, 2014

This report discusses the defining features of long-term longitudinal studies and the associated challenges for researchers tasked with collecting and analyzing such data while protecting the privacy of human subjects. It also describes the disclosure risks and common legal and technical approaches currently used to manage confidentiality in longitudinal data. Finally, it identifies urgent problems and areas for future research to advance the integration of various methods for preserving confidentiality in research data.