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Expanding Access to Research Data: Reconciling Risks and Opportunities
Privacy has many dimensions. The emphasis in this report is on informational privacy, which encompasses an individual’s freedom to choose the extent and circumstances under which personal information will be shared with others, and how it will be used. Confidentiality refers broadly to an obligation not to transmit identifiable information—for an individual or a business—to an unauthorized party. More specifically, this report is concerned with the explicit or implicit promises made to respondents regarding how their data will be used and the extent to which they will be protected against the risk that the data they provide may allow others to identify them (see National Research Council, 1993:22).
The nation needs to use its statistical data, especially properly protected microdata, for credible, detailed analyses of current and proposed government programs and policies in such areas as education, health care, and taxation. These data are also needed for basic research in the social, behavioral, and economic sciences that can advance the quality and scope of policy analyses. Much basic and policy research will be undertaken outside the federal government, in universities and other research centers. Thus, there are questions about how to provide researchers—inside and outside government—access to data that can both inform public policy and protect the privacy of respondents and the confidential nature of the information they provide.
SCOPE AND STRUCTURE OF REPORT
In response to those questions, the Panel on Data Access for Research Purposes undertook a study to understand and propose ways to resolve the tension between the goal of facilitating researchers’ access to federal data collections, particularly detailed microdata sets, and that of maintaining confidentiality. The panel was convened by the National Academies’ Committee on National Statistics (CNSTAT) at the request of the National Institute on Aging, which supports the collection of microdata and funds research that depends on the availability of those data for analysis. The panel began its work early in 2003, building on earlier efforts by CNSTAT. Those efforts included a major comprehensive review of the issues more than a decade ago, which produced Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics (National Research Council, 1993) and a workshop held in 1999 (National Research Council, 2000). A CNSTAT report from two decades ago on the benefits of sharing research data is also still relevant (National Research Council, 1985).
The panel was given the following specific charge for its work:
This study will assess competing approaches to promoting exploitation of the research potential of microdata—particularly linked longitu-