• 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.)
• 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.

• 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. Contact [email protected] for access

• 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.

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.

Overview:
The chapter provides a good overview of the principles and purposes of public health surveillance with a focus on issues relating to the release of cancer data. There is a balanced discussion about the benefits and risks of the release of cancer data and the search for an approach that benefits public health while minimizing the risks to individuals. The chapter includes brief discussions of confidentiality protection as it pertains to registry operations as well as the release of aggregate data, of restricted access or public use files, and of identifiable data for research. The chapter also covers in more depth issues related to contacting patients for research that central registries could use as a guide in developing their policies.

Doyle P et al, editors, Confidentiality, Disclosure and Data Access, Theory and Practical Applications for Statistical Agencies. 2001, Elsevier, New York.

Overview:
There is a fundamental tension at the heart of every statistical agency. Each is charged with collecting high quality data to inform national policy and enable statistical research. This necessitates dissemination of both summary and microdata. Each is also charged with protecting the confidentiality of survey respondents. This often necessitates the blurring of the data to reduce the probability of the re-identification of individuals. This dilemma, which could well be stated as protecting confidentiality (avoiding disclosure) but optimizing access, has become more complex as both technological advances and public perceptions have altered in the information age. Fortunately, statistical disclosure techniques have kept pace with these changes. This volume is intended to provide a review of new state of the art techniques that directly address these issues from both a theoretical and practical perspective.

It provides a review of new research in the area of confidentiality and statistical disclosure techniques. A major section of the book provides an overview of new advances in the field of both economic and demographic data in measuring disclosure risk and information loss. It also presents new information on the different approaches taken by statistical agencies in disseminating data – ranging from licensing agreements, to secure access and provides a new survey of what statistical disclosure techniques are used by statistical agencies around the world. This is complimented by a series of chapters on public perceptions of statistical agency actions, including the results of a new survey on business perceptions. The book concludes with a chapter on the challenges of technology to data protection.

Contents

• Introduction. Disclosure limitation methods in use: results of a survey (F. Felso, J. Theeuwes, G.G. Wagner).
• Information Explosion (L. Sweeney).
• Disclosure risk assessment (M. Elliot).
• Disclosure control methods and information loss for microdata (J. Domingo-Ferrer, V. Torra).
• A quantitative comparison of disclosure control methods for microdata (J. Domingo-Ferrer, V. Torra). Disclosure limitation methods and information loss for tabular data (G.T. Duncan, et al.).
• Disclosure risk for tabular economic data (L.H Cox).
• Nonperturbative disclosure control methods for tabular data (S. Giessing).
• Disclosure limitation in longitudinal linked data (J.M. Abowd, S.D. Woodcock).
• Licensing (M.M. Seastrom).
• Issues in the establishment and management of secure research sites (T. Dunne).
• The potential of confidentiality and attitudes toward data sharing by federal agencies (E. Singer).
• The privacy context of survey response: an ethnographic account (E.R. Gerber).
• Business perceptions of confidentiality (N. Greenia, J. Bradford Jensen, J. Lane).