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Volume I, Data Exchange Standards and Record Description
Volume II, Data Standards and Data Dictionary
Volume III, Standards for Completeness, Quality, Analysis, Management, Security, and Confidentiality of Data
Volume IV, Standard Data EDITS
Volume V, Pathology Laboratory Electronic Reporting
Annotated Bibliography on Confidentiality Protection in Data Release
Reports
U.S. National Center for Health Statistics Staff Manual on Confidentiality
U.S. Healthy People 2010 Criteria for Data Suppression
Secondary Use of Personal Health Information in Health Research : Case Studies, Canadian Institutes of Health Research. Public Works and Government Services Canada, 2002
Tri-Council Policy Statement (TCPS) : Ethical Conduct for Research Involving Humans. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Public Works and Government Services Canada, 1998. (with amendments in 2000, 2002 and 2005)
Data Use and Confidentiality Task Force Report (NAACCR task force), December 1999
Review of the Dissemination of Health Statistics: Confidentiality Guidance. Office for National Statistics, United Kingdom, 2006
Census Confidentiality and Privacy: 1790-2002. U.S. Bureau of the Census 2002
Report on Statistical Disclosure Limitation Methodology, Statistical Policy Working Paper #22, Federal Committee on Statistical Methodology (FCSM), Confidentiality and Data Access Committee (CDAC), December 2005 (Revised)
Putting People on the Map: Protecting Confidentiality with Linked Social-Spatial Data, National Research Council, MP Gutmann, PC Stern, EDS; The National Academic Press, 2007
Software and Tools
Checklist on Disclosure Potential of Proposed Data Releases, July 1999
Computational Aspects of Statistical Confidentiality (CASC) Project
NAACCR Record Uniqueness
Articles
McLaughlin CC. Confidentiality protection in publicly released central cancer registry data. J. Reg Manag. 2002; 84-88
Chen VW. The right to know vs. the right to privacy. J. Reg Manag. 1997; 125-127
Howe H. et al. Method to assess identifiability in electronic data files. Am J Epidemiol. 2007 Mar 1;165(5):597-601
Deapen D. Cancer surveillance and information: balancing public health with privacy and confidentiality concerns (United States). Cancer Causes Control. 2006 Jun;17(5):633-7. Review
Fairchild AL, Gable L, Gostin LO, Bayer R, Sweeney P, Janssen RS. Public goods, Private data: HIV and the history, ethics and uses of identifiable public health information. Public Health Rep. 2007;122 Suppl 1:7-15
Steel PM. Disclosure Risk Assessment for Microdata. U. S. Census Bureau, Statistical Disclosure Control research paper, 2004
Books
Deapen D, Legislation, Regulations, and Confidentiality. In Central Cancer Registries, Design, Management and Use, 2nd Edition, Menck HR, Deapan D, Phillips JL and Tucker TC editors. 2007. Kendall/Hunt. Dubuque Iowa
Doyle P et al, editors, Confidentiality, Disclosure and Data Access, Theory and Practical Applications for Statistical Agencies. 2001, Elsevier, New York
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