Studies of Welfare Populations: Data Collection and Research Issues. Summary of Federal Legislation

06/01/2002

Federal legislation has been built on a concern about disclosure of information about individuals. It has been done without much thought about the needs of researchers who only care about individual identities when they match data sets. At the moment, the federal regulatory environment for data is characterized by a multiplicity of laws, cross-cutting jurisdictions (e.g., Data Integrity Boards and IRBs), and some incoherence. The emphasis on informed consent in many laws would appear to limit severely the use of administrative data, but agencies have 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)

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