Integrating Approaches to Privacy Across the Research Lifecycle: Long-Term Longitudinal Studies

26 Pages Posted: 23 Jul 2014  

Alexandra Wood

Harvard University - Berkman Klein Center for Internet & Society

David O'Brien

Harvard University - Berkman Klein Center for Internet & Society

Micah Altman

Massachusetts Institute of Technology (MIT) Libraries; The Brookings Institution

Alan Karr

RTI International

Urs Gasser

Harvard University - Berkman Klein Center for Internet & Society

Michael Bar-Sinai

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

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

Date Written: July 22, 2014

Abstract

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.

Keywords: privacy, information privacy, data privacy, confidentiality, longitudinal data, social science research

Suggested Citation

Wood, Alexandra and O'Brien, David and Altman, Micah and Karr, Alan and Gasser, Urs and Bar-Sinai, Michael and Nissim, Kobbi and Ullman, Jonathan and Vadhan, Salil and Wojcik, Michael John, Integrating Approaches to Privacy Across the Research Lifecycle: Long-Term Longitudinal Studies (July 22, 2014). Berkman Center Research Publication No. 2014-12. Available at SSRN: https://ssrn.com/abstract=2469848 or http://dx.doi.org/10.2139/ssrn.2469848

Alexandra Wood (Contact Author)

Harvard University - Berkman Klein Center for Internet & Society ( email )

Harvard Law School
23 Everett, 2nd Floor
Cambridge, MA 02138
United States

David O'Brien

Harvard University - Berkman Klein Center for Internet & Society ( email )

Harvard Law School
23 Everett, 2nd Floor
Cambridge, MA 02138
United States

Micah Altman

Massachusetts Institute of Technology (MIT) Libraries ( email )

77 Massachusetts Avenue
50 Memorial Drive
Cambridge, MA 02139-4307
United States

HOME PAGE: http://informatics.mit.edu

The Brookings Institution ( email )

1775 Massachusetts Ave, NW
Washington, DC 20036
United States

HOME PAGE: http://informatics.mit.edu

Alan Karr

RTI International ( email )

PO Box 12194
Research Triangle Park, 27709
United States

Urs Gasser

Harvard University - Berkman Klein Center for Internet & Society ( email )

Harvard Law School
23 Everett, 2nd Floor
Cambridge, MA 02138
United States

HOME PAGE: http://cyber.law.harvard.edu/people/ugasser.html

Michael Bar-Sinai

Ben Gurion University of the Negev ( email )

1 Ben-Gurion Blvd
Beer-Sheba 84105, 84105
Israel

HOME PAGE: http://https://www.cs.bgu.ac.il/~barsinam/

Harvard University - Institute for Quantitative Social Science ( email )

1737 Cambridge St.
Cambridge, MA 02138
United States

HOME PAGE: http://www.iq.harvard.edu/people/michael-bar-sinai

Kobbi Nissim

Ben-Gurion University of the Negev ( email )

1 Ben-Gurion Blvd
Beer-Sheba 84105, 84105
Israel

Jonathan Ullman

Columbia University Department of Computer Science ( email )

New York, NY 10027
United States

Salil Vadhan

Harvard University - Center for Research on Computation and Society ( email )

33 Oxford Street
Cambridge, MA 02138
United States

Michael John Wojcik

Harvard University - Center for Research on Computation and Society ( email )

33 Oxford Street
Cambridge, MA 02138
United States

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