New Report: "Integrati​ng Privacy Approaches across the Research Lifecycle: Long-term Longitudin​al Studies"


On September 24-25, 2013, the Privacy Tools for Sharing Research Data project at Harvard University held a workshop titled "Integrating Approaches to Privacy across the Research Data Lifecycle." Over forty leading experts in computer science, statistics, law, policy, and social science research convened to discuss the state of the art in data privacy research. The resulting conversations centered on the emerging tools and approaches from the participants’ various disciplines and how they should be integrated in the context of real-world use cases that involve the management of confidential research data.

This workshop report, the first in a series, provides an overview of the long-term longitudinal study use case. Long-term longitudinal studies collect, at multiple points over a long period of time, highly-specific and often sensitive data describing the health, socioeconomic, or behavioral characteristics of human subjects. The value of such studies lies in part in their ability to link a set of behaviors and changes to each individual, but these factors tend to make the combination of observable characteristics associated with each subject unique and potentially identifiable.

Using the research information lifecycle as a framework, 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.

Alexandra Wood

Harvard University - Berkman Center for Internet & Society

David O'Brien

Harvard University - Berkman Center for Internet & Society

Micah Altman

MIT Libraries; The Brookings Institution

Alan Karr

National Institute of Statistical Sciences

Urs Gasser

Harvard University - Berkman Center for Internet & Society; University of St. Gallen

Michael Bar-Sinai

Harvard University - Institute for Quantitative Social Science; Ben-Gurion University of the Negev

Kobbi Nissim

Ben-Gurion University of the Negev

Jonathan Ullman

Columbia University Department of Computer Science

Salil Vadhan

Harvard University - Center for Research on Computation and Society

Michael John Wojcik

Harvard University - Center for Research on Computation and Society
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