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Data Access and Personal Privacy: Appropriate
Methods of Disclosure Control
A statement by the American Statistical Association
Approved December 6, 2008
Access to high quality data is essential to advancing science and improving the human condition. Robust new sources
of data on human behavior allow researchers to ask and answer complex questions and hence guide policy decisions.
Powerful and sophisticated electronic technologies have made much of this data readily accessible to the public.
At the same time, much of this data contains personal information, so these electronic tools for combining and
analyzing publicly accessible data pose a distinct threat—in perception if not in reality—to privacy, as well as a
potential for inflicting great harm on persons and establishments. The protection of personal privacy is of paramount
importance in engaging the cooperation of respondents, and thus in producing and distributing the high quality data
needed for research. Fortunately, modern statistical tools have been developed to help ensure the appropriate treatment
of confidential information while still making useful data available for public policy and scientific advancement.
This statement is intended to provide the American Statistical Association’s (ASA) perspective on the assessment of
the risk associated with data dissemination and an overview of the way in which statisticians can help limit that risk.
The ASA urges distributors and users of data, particularly sensitive data such as public health and biologic data,
to familiarize themselves with risk assessment, and to consult with statistical professionals when necessary. The ASA
further urges the media to be mindful of these issues when it presents data to the public.
Context
Many forms of data are collected and disseminated
to guide both research and policy decisions. For
example, health data on individuals are collected
and used by state agencies and others so that trends
can be monitored, potential public health hazards
can be identified, and public health can be protect-
ed. At the same time, the privacy of the individuals
who provide the data must be safeguarded. An illus-
tration of the tension between these sometimes con-
flicting needs occurred in Delaware in 2008. The
Delaware press sought detailed information about
the location and characteristics of certain cancers.
However, the Delaware Division of Public Health
cited privacy concerns in refusing the release of such
data. In response to these concerns, the state passed
legislation (Delaware Senate Bill 235, now state law)
requiring the release of such data but allowing the
agency to take steps first to protect patient privacy.
6 AMSTAT NEWS FEBRUARY 2009
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