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Studies of Welfare Populations: Data Collection and Research Issues
used the provisions for statistical analysis and for “routine use” to allow researchers to use administrative data. All in all, the legal situation is highly ambiguous for researchers, and no one has come to grips with what should be done with data when informed consent is not possible and when researchers need identities solely for the interim stage of data matching.11
STATE PRIVACY AND CONFIDENTIALITY CONSIDERATIONS
It would be useful to conduct a state-by-state analysis of how privacy, confidentiality, and consent laws affect research and to compare the results with the impacts of federal laws and regulations. This analysis would contribute significantly to achieving a more complete and substantial understanding of how state and federal requirements interact with one another. However, this task is far beyond what we can do here. Instead, we make some comments based on the secondary literature.
State constitutional privacy protections are very diverse. For example, in California, privacy protections are expressly mentioned in the constitution, while Washington state’s constitution requires that certain information—such as who receives welfare—be publicly available. In addition to state constitutional provisions regarding privacy and confidentiality, every state has enacted numerous privacy protection laws principally drafted in response to a specific perceived problem. The result is many narrow prescriptions, rather than a coherent statement of what information is private, when it can be collected, and how it can be used. Consequently, it is hard to know exactly what information is protected, and how it is protected. In addition, many privacy laws have exceptions and exemptions that make them hard to understand, hard to apply, and subject to divergent interpretations (Stevens, 1996). The resulting laws have been described as “reactive, ad-hoc, and confused” (Reidenberg and Gamet-Pol, 1995).
There are two broad classes of laws, those dealing with privacy in general and those that mention privacy and confidentiality in the process of establishing programs. The general privacy laws deal with computer crime, medical records, the use of Social Security numbers, access to arrest records, and other issues. Table 8–1 indicates the presence of general state privacy protections for the states in which there are ASPE welfare leavers studies (Smith, 1999).12 It shows that state privacy laws cover a broad range of issues from arrest records to wiretaps,
The recent National Academy Press publication, Improving Access to and Confidentiality of Research Data (National Research Council, 2000) is directed to this exact set of concerns.
Basic information about state privacy laws in all states is available in Compilation of State and Federal Privacy Laws (Smith, 1999). We have focused on states with ASPE leavers studies to complement the survey described later.