[Rdap] Fwd: [report-release-list] New Report: "Integrating Privacy Approaches across the Research Lifecycle: Long-term Longitudinal Studies"

[Adrian Ho]

Of possible interest.

Adrian


---------- Forwarded message ----------
From: Rebecca Tabasky <rtabasky at cyber.law.harvard.edu>
Date: Mon, Aug 4, 2014 at 10:06 AM
Subject: [report-release-list] New Report: "Integrating Privacy Approaches
across the Research Lifecycle: Long-term Longitudinal Studies"
To: report-release-and-press-list at eon.law.harvard.edu
Cc: David O'Brien <dobrien at cyber.law.harvard.edu>

 Dear friends and colleagues,

The Berkman Center for Internet & Society at Harvard University is pleased
to announce a new publication from its Privacy Tools for Sharing Research
Data <https://cyber.law.harvard.edu/research/privacy_tools> project team,
titled “Integrating Privacy Approaches across the Research Lifecycle:
Long-term Longitudinal Studies.”
<http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2469848>

This paper explores interdisciplinary approaches to privacy in long-term
longitudinal studies of human subjects. 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, the paper
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.

The paper is the first in a series of reports based on the Integrating
Approaches to Privacy across the Research Data Lifecycle workshop, held by
the Privacy Tools for Sharing Research Data project at Harvard University
on September 24-25, 2013. The workshop convened over forty leading experts
in computer science, statistics, law, policy, and social science research
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. Additional reports are forthcoming in 2014.

The full paper is available for download at SSRN: "Integrating Approaches
to Privacy across the Research Lifecycle: Long-term Longitudinal Studies"
<http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2469848>
About the Privacy Tools for Sharing Research Data Project

Funded by the National Science Foundation, the Privacy Tools for Sharing
Research Data project is a collaboration between the Berkman Center for
Internet & Society, the Center for Research on Computation and Society
(CRCS) <http://crcs.seas.harvard.edu/>, the Institute for Quantitative
Social Science <http://www.iq.harvard.edu/>, and the Data Privacy Lab
<http://dataprivacylab.org/>that seeks to develop methods, tools, and
policies to facilitate the sharing of data while preserving individual
privacy and utility.

Executive Director and Harvard Law School Professor of Practice Dr. Urs
Gasser leads the Berkman Center's role in this exciting initiative, which
brings the Center's institutional knowledge and practical experience to
help tackle the legal and policy-based issues in the larger project. More
information about the project is available on the Berkman Center’s website
<http://cyber.law.harvard.edu/research/privacy_tools>and the official
project website <http://privacytools.seas.harvard.edu/>.
About the Berkman Center for Internet & Society

The Berkman Center for Internet & Society at Harvard University is a
research program founded to explore cyberspace, share in its study, and
help pioneer its development. Founded in 1997, through a generous gift from
Jack N. and Lillian R. Berkman, the Center is home to an ever-growing
community of faculty, fellows, staff, and affiliates working on projects
that span the broad range of intersections between cyberspace, technology,
and society. More information can be found at http://cyber.law.harvard.edu.
Contact <dobrien at cyber.law.harvard.edu>

<dobrien at cyber.law.harvard.edu>Please contact David O'Brien at
dobrien at cyber.law.harvard.edu with questions or media inquiries.


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