Privacy and Confidentiality Resources
Journal of Empirical Research on Human Research Ethics 2009 September; 4(3): 33-34
SEVERAL ORGANIZATIONS IN THE United States have a major interest in creating, testing, and using methods of data presentation that respect privacy and assure confidentiality. The following are among those that do so, and provide up-to-date information on these topics for the benefit of others who conduct human research: (1) The Committee on Privacy and Confidentiality of the American Statistical Association; (2) an interagency committee of the federal government, the Federal Committee on Statistical Methodology, and its subcommittees, the Confidentiality and Data Access Committee and the Committee on Privacy; (3) the Inter-university Consortium for Political and Social Research (University of Michigan), whose core mission is to archive important social science data, provide open and equitable access to data, and promote the effective use of data; and (4) Carnegie Mellon University's Department of Statistics, which has created an open-access online journal, the Journal on Privacy and Confidentiality. These resources are described, and URLs are provided to give readers web access to these resources.
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Nass, Sharyl J.; Levit, Laura A.; and Gostin, Lawrence O. (Institute of Medicine (United States). Board on Health Care Services. Board on Health Services Policy. Committee on Health Research and the Priavcy of Health Information: The HIPAA Privacy Rule, 2009)
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