Studies of Welfare Populations: Data Collection and Research Issues. Technical and Institutional Solutions

06/01/2002

There are two basic ways to limit disclosure, data alteration, and restricted access to data. The recent National Research Council (2000) report on "Improving Access to and Confidentiality of Research Data" notes the strengths and weaknesses of each method:

Data alteration allows for broader dissemination, but may affect researchers' confidence in their modeling output and even the types of models that can be constructed. Restricting access may create inconveniences and limit the pool of researchers that can use the data, but generally permits access to greater data detail (29).

"Anonymizing" data by removing identifying information is one method of data alteration, but this procedure may not limit disclosure enough. Data alteration can be thought of as a more versatile and thorough collection of methods for reducing the risk of disclosure.

Requiring informed consent for the use of data can be thought of as an institutional method for restricting access, but it may be impractical or it may be inadequate in many cases. Once data have been collected in an administrative system, it is nearly impossible to go back and obtain informed consent, but perhaps more importantly, informed consent might not really serve the purposes of individuals who cannot easily judge the costs and benefits of the various ways data might be used. We discuss some institutional methods such as Confidential Research Data Centers that can protect individual privacy and ensure confidentiality while making data available to researchers.

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