1. The 26 states inventoried in the report included the 10 states with the largest populations plus a random selection of at least four states from the northeast, south, west, and midwestern regions of the nation. These states comprise four-fifths of the U.S. population and more than five-sixths of the welfare population. This report can be viewed at http://ucdata.berkeley.edu.
2. Note that we are using the term "data sharing" in a fashion that is much narrower than its colloquial meaning.
3. Bethlehem et al. (1990:38) define disclosure in this way when they say that "Identification is a prerequisite for disclosure. Identification of an individual takes place when a one-to-one relationship between a record in released statistical information and a specific individual can be established." It seems to us that this is a sufficient condition for improper disclosure to have occurred, but it is not clear that it is a necessary condition.
4. Most of the literature on statistical data collection (e.g., National Research Council and Social Science Research Council, 1993) assumes that disclosure in and of itself is a bad thing. This presumption developed because most of this literature deals with a very specific situation where statistical agencies have collected data under the promise that they will not share it with anyone and where disclosure refers to information that can be readily attached to an individual. Because we deal with a much broader class of situations, we find it useful to distinguish between disclosure and improper disclosure where impropriety may vary with the circumstances of data collection and data use.
5. Other commissions and organizations developed similar codes of fair information practice that appear to limit severely the availability of data. Hotz et al. (1998) summarizes the common themes as follows:
- Promote openness.
- Provide for individual participation.
- Limit the collection of personal information.
- Encourage accurate, complete, and current information.
- Limit the use of information.
- Limit the disclosure of information.
- Ensure the information is secure.
- Provide a mechanism for accountability.
6. Other important laws include the Freedom of Information Act (enacted in 1966), the Family Education Rights and Privacy Act of 1974, the Confidentiality of Alcohol and Drug Abuse Patient Records Act, the Right to Financial Privacy Act of 1978, and the Drivers Privacy Protection Act of 1994.
7. U.S.C.S. §552a(e).
8. U.S.C.S. §552a(b)(3).
9. 45 CFR Part 46.
10. In an effort to simplify the complex regulations governing IRBs, we conflate waiver of informed consent (which does not necessarily mean exemption from IRB review) with exemptions.
11. 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.
12. 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.
13. We also include Washington state's statute, which provides for researchers having access to administrative data.
14. Basic information about state privacy laws is available in a recent publication, Compilation of State and Federal Privacy Laws (Smith, 1999).
15. Fall 1999.
16. Texas was not an ASPE Fiscal Year 1998 welfare leavers study grantee.
17. The U.S. Census Bureau "Research Data Centers Programs" is entirely based on the strong belief that researchers can help the Bureau improve the quality of its data, and researchers are required, by law and regulation, to develop strong rationales for why their work will improve census data.
18. See "Report on Statistical Disclosure and Limitation Methodology" prepared by the Subcommittee on Disclosure Limitation Methodology and published by the Office of Management and Budget in 1994.
19. The exception is when researchers want to contact individuals list in administrative file. The human subject risks are greater here, and they require greater scrutiny
20. There are also technical obstacles to using administrative data, but we do not believe these are the major difficulties faced by most researchers. Theses obstacles include hardware and software incompatibility and lack of common standards. Fortunately, technological advances increasingly are addressing these issues, and they are less import compared to other difficulties.
21. Landsbergen and Wolken (1998) interviewed officials in five states about barriers to establishing, maintaining and evaluating informational data sharing policies and practices. Although this study focused on data sharing and these five states' experiences with regard to environmental programs, the conclusions clearly extend to data access in other topical areas.
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