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Health Confidentiality Bibliography
``` [This bibliography should be of interest given the current US legislative action on medical records privacy issues. Bob Gelman is one of the foremost authorities in this area, having worked on such issues as a Congressional staffer for many years.]
Date: Fri, 24 Nov 1995 15:59:00 -0500 (EST)
From: Robert Gellman
[...]
Health Confidentiality Bibliography
Prepared by Robert Gellman August 23, 1995 rgellman@cais.com
Supreme Court Cases
United States v. Miller, 425 U.S. 435 (1976).
Whalen v. Roe, 429 U.S. 589 (1977).
Reporters Committee for Freedom of the Press v. Department of Justice, 489 U.S. 749 (1989).
U.S. Department of Defense v. F.L.R.A., 114 S. Ct. 1006 (1994).
Congressional Materials
Privacy of Medical Records, Hearings before a Subcomm. of the House Comm. on Government Operations, 96th Cong., 1st Sess. (1979).
Legislation to Protect the Privacy of Medical Records, Hearings before the Senate Committee on Governmental Affairs, 96th Cong. 1st Sess. (1979).
House Committee on Government Operations, Federal Privacy of Medical Information Act, H.R. Rep. No 96-832 Part 1, 96th Cong., 2d Sess. (1980).
Data Protection, Computers, and Changing Information Practices, Hearing before the Subcomm. on Government Information, Justice, and Agriculture, House Comm. on Government Operations, 101st Cong., 2d Sess. (1990).
Health Reform, Health Records, Computers and Confidentiality, Hearing before the Information, Justice, Transportation, and Agriculture Subcomm. of the House Committee on Government Operations, 103rd Cong., 1st Sess. (1993).
Fair Health Information Practices Act of 1994, Hearings before the Information, Justice, Transportation, and Agriculture Subcomm. of the House Committee on Government Operations, 103rd Cong., 2d Sess. (1994).
House Committee on Government Operations, Health Security Act, H.R. Rep. No 103-601 Part 5, 103rd Cong., 2d Sess. (1994).
Regulations
Confidentiality of Alcohol and Drug Abuse Patient Records, 42 CFR Part 2, 52 Federal Register 21796 (1987).
Protection of Human Subjects, 45 CFR Part 46 (1994).
Books, Articles, and Studies
Department of Health Education, & Welfare, Secretary's Advisory Committee on Automated Personal Data Systems, Records, Computers, and the Rights of Citizens (1973).
Alan F. Westin, Computers, Health Records, and Citizen's Rights (U.S. Department of Commerce) (1976).
Privacy Protection Study Commission, Personal Privacy in an Information Society (1977).
Robert Gellman, Prescribing Privacy: The Uncertain Role of the Physician in the Protection of Patient Privacy, 62 North Carolina Law Review 255 (1984).
National Conference of Commissioners on Uniform State Laws, Uniform Health Care Information Act 9 (Part I) U.L.A. 475 (1985 & Supp. 1994).
David Flaherty, Protecting Privacy in Surveillance Societies (1989).
Institute of Medicine, The Computer-Based Patient Record (1991).
Colin J. Bennett, Regulating Privacy: Data Protection and Public Policy in Europe and the United States (1992).
Jeffrey Rothfeder, Privacy For Sale (1992).
Workgroup for Electronic Data Interchange, Report to Secretary of U.S. Department of Health and Human Services (1992).
Robert Gellman, Fragmented, Incomplete, and Discontinuous: The Failure of Federal Privacy Regulatory Proposals and Institutions, VI Software Law Journal 199 (1993).
Office of Technology Assessment, Protecting Privacy in Computerized Medical Information (1993).
Louis Harris & Associates, Health Information Privacy Survey 1993 (1993).
Institute of Medicine, Health Data in the Information Age: Use, Disclosure, and Privacy (1994).
H. Jeff Smith, Managing Privacy: Information Technology and Corporate America (1994).
Robert Gellman, Fair Health Information Practices, 4 Behavioral Healthcare Tomorrow 65 (1995).
George Annas et al, The Genetic Privacy Act and Commentary (1995).
Paul Schwartz, The Protection of Privacy in Health Care Reform, 48 Vanderbilt Law Review 295 (1995).
Priscilla Regan, Legislating Privacy: Technology, Social Values, and Public Policy (1995).
International Materials
Royal Commission of Inquiry into the Confidentiality of Health Records in Ontario (Canada), Report of the Commission of Inquiry into the Confidentiality of Health Information (1980) (3 vols.).
Organization for Economic Cooperation and Development, Guidelines on the Protection of Privacy and Transborder Flows of Personal Data (1981).
Council of Europe, Convention for the Protection of Individuals With Regard to Automatic Processing of Personal Data (1981).
Privacy Commissioner of Canada, AIDS and the Privacy Act (1989).
Privacy Commissioner of Canada, Genetic Testing and Privacy (1992).
Note: This is not intended to be a complete bibliography, but it identifies many basic medical confidentiality documents and some related privacy materials. For a comprehensive bibliography that focuses broadly on the ethical, legal and social implications of the Human Genome Project, see Michael Yesley, ELSI Bibliography (1993) (U.S. Department of Energy). ```
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