|
Education > Privacy Bibliography
Advisory Committee on Automated Personal
Data Systems. 1973. Records,
Computers and the Rights of Citizens. Washington
DC: US Government Printing Office.
One of the seminal works on data protection
Agency for Health Care Administration (Florida), HIPAA
Privacy Law and Procedures Manual (2003)
Good overview of HIPAA, that includes discussion of state
Medicaid regulations. Little discussion of Florida statutory/regulatory
requirements, however.
Agency for Health Care Policy and Research.
1996. Healthcare
Informatics Standards Activities of Selected Federal Agencies:
A Compilation. Washington DC: Moshman Associates.
The foundations for HIPAA's transactions and code sets
standards were set long ago
American Hospital Association. 1992. A
Patient Bill of Rights. Chicago IL: American
Hospital Association.
Several of the rights relate to access to, and protection
for, patients' information
American Medical Association. 2001,2002.
Council on Ethical and Judicial Affairs. Principles
of Medical Ethics and Current Ethical Opinions.
Chicago IL: American Medical Association.
Anderson, James G. and Kenneth W. Goodman.
2002. Ethics and Information Technology. New York:
Springer-Verlag.
Association of American Medical Colleges.
2001. Guidelines
for Academic Medical Centers on Security and Privacy: Practical
Strategies for Addressing the Health Insurance Portability
and Accountability Act. Washington DC: AAMC.
Good overview or privacy and security rules, with a medical
center perspective
Barrows, Randolph and Clayton, Paul. 1996.
"Privacy, Confidentiality and Electronic Medical Records"
Journal of the American Medical Informatics Association
3:139-148.
Beauchamp, Tom L. and Childress, James F.
1994. Principles of Biomedical Ethics, 4th
Edition. New York NY: Oxford University Press.
Bennett, Bob. 1995. Medical Records:
Sweeping Reforms to Ensure Privacy of Personal Medical Records.
Federal Document Clearinghouse Press Release, 24 October.
Bennett, Colin J. 1992. Regulating Privacy:
Data Protection and Public Policy in Europe and the United
States. Ithaca NY: Cornell University Press.
Centers for Disease Control and Prevention.
1996. Legislative Survey of State Confidentiality Laws,
with Specific Emphasis on HIV and Immunization.
Council of Europe. 1981. Convention
for the Protection of Individuals with regard to Automatic
Processing of Personal Data.
One of the early European declarations of fair information
principles
Cushman, Reid and Detmer, Don E. 1998. "Information
Policy for the US Health Sector: Engineering, Economics and
Ethics" Milbank Quarterly.
An overview of the topic for a general audience
Department of Health and Human Services.
1993. Health Records: Social Needs and Personal Privacy.
Washington DC: US Government Printing Office.
Department of Health and Human Services.
1995. Task Force on Privacy of Private-Sector Records:
Final report. Rockville MD: Kunitz and Associates.
Electronic Privacy Information Center and
Privacy International, Privacy
and Human Rights 2002: An International Survey of Privacy
Laws and Developments (September 2002)
EPIC and PI provide a comprehensive overview of current
privacy issues, including in-depth reports on more than
50 countries.
Etziony, M. B. 1973. The Physician's
Creed: An Anthology of Medical Prayers, Oaths and Codes of
Ethics Written and Recited by Medical Practitioners through
the Ages. Springfield IL: Charles C. Thomas.
Evans, RS, Larsen RA, Burke JP, Gardner
RM, Meier FA, Jacobsen JT, and Hulse RK. 1996. "Computer Surveillance
of Hospital-Acquired Infections and Antibiotic Use." Journal
of the American Medical Association 256:1007-11.
Flaherty, David H. 1989. Protecting Privacy
in Surveillance Societies: The Federal Republic of Germany,
Sweden, France, Canada, and the United States. Chapel
Hill NC: University of North Carolina Press.
Folland, Sherman, Allen C. Goodman, and
Miron Stano. 1993. The Economics of Health and Health Care
New York NY: MacMillan Publishing.
Gavison, Ruth. 1984. Privacy and the Limits
of Law. In Schoeman, Ferdinand (ed). Philosophical Dimensions
of Privacy: An Anthology. Cambridge UK: Cambridge University
Press.
Gellman, Robert M. 1996. "Can Privacy Be
Regulated Effectively on a National Level? Thoughts on the
Possible Need for International Privacy Rules." Villanova
Law Review 41(1):129-165.
Gellman, Robert. "Health
Privacy: The Way We Live Now" (August 2002)
Gellman's narrative provides a particularly clear-eyed
(and depressing) assessment of how little health privacy
we have today.
General Accounting Office. 1991. Medical
ADP Systems: Automated Medical Records Hold Promise to Improve
Patient Care. Washington DC: US Government Printing
Office.
The expected benefits of greater "automated data processing"
for the health sector have long been discussed
General Accounting Office. 1993. Automated
Medical Records: Leadership Needed to Expedite Standards Development.
Washington DC: US Government Printing Office.
Standardization of transaction formats, codes and, especially,
vocabularies has long stymied attempt to fully "automate"
health care
General Accounting Office. 1996. Defense
Achieves World-Wide Deployment of Composite Health Care System.
(Washington DC: US Government Printing Office)
The DOD's effort to develop fully-computerized health information
systems shows both the promises and the pitfalls
Goldman, Janlori. 1995. Statement Before
the Senate Committee on Labor and Human Resources on S.1360.
Federal Document Clearinghouse Congressional Testimony, 14
November.
Goodman, Kenneth W. 1998. Ethics, Computing
and Medicine. Cambridge UK: Cambridge University Press.
Gostin, Lawrence O. et al. 1993. Privacy
and Security of Personal Information in a New Health Care
System. Journal of the American Medical Association
270 (24 November) 2487-2493.
Gostin, Lawrence O. 1994. "Health Information
Privacy" Cornell Law Review 80:101-132.
Gostin, Lawrence O. and Hodge, James G.
1999. "Privacy
and Security of Public Health Information" Model
State Public Health Privacy Project.
This project seeks to develop, draft, and implement a model
state privacy law pertaining to the use of public health
information, particularly information gathered pursuant
to HIV/AIDS reporting requirements.
Harris-Equifax. 1993. Harris-Equifax
Health Information Privacy Survey 1993 Atlanta GA: Equifax
Inc.
Health Privacy Project, The
State of Health Privacy: an Uneven Terrain (A Comprehensive
Survey of State Health Privacy Statutes) (ongoing)
HPP is in the process of reviewing each state's health
privacy laws
Institute of Medicine. 1988. The Future
of Public Health. Washington DC: National Academy Press.
Institute of Medicine. 1990. Modern Methods
of Clinical Investigation. Washington DC: National Academy
Press.
Institute of Medicine. 1991. The
Computer-Based Patient Record: An Essential Technology for
Health Care. Washington DC: National Academy
Press.
One of the most comprehensive studies of the benefits of
computerizing health records
Institute of Medicine. 1994. Health
Data in the Information Age: Use, Disclosure and Privacy.
Washington DC: National Academy Press.
One of the most comprehensive studies of the privacy risks
of computerization
Jones, Nancy Lee and Smith, Alison M. 2003.
"Genetic
Information: Legal Issues Relating to Discrimination and Privacy"
Congressional Research Service Report (RL-30006)
National Committee on Vital and Health Statistics(NCVHS).
1997. Hearings of the Subcommittee on Health Data Needs, Standards
and Security, and of the Subcommittee on Privacy and Confidentiality,
under the Health insurance Portability and Accountability
Act (P1 104-191).
National Institute of Standards and Technology.
1994. Putting the Information Infrastructure to Work: Report
of the Information Infrastructure Task Force Committee on
Applications and Technology. Washington DC: US Government
Printing Office.
National Library of Medicine. 1996. Current
Bibliographies in Medicine: Confidentiality of Electronic
Health Data. Washington DC: US Government Printing
Office.
A comprehensive list (though somewhat dated now) of writing
on the subject
National Research Council. 1972. Databanks
in a Free Society: Computers, Record-Keeping, and Privacy.
Washington DC: National Academy Press.
National Research Council. 1991. Computers
at Risk: Safe Computing in the Information Age. Washington
DC: National Academy Press.
A comprehensive analysis of computer security from the
NRC
National Research Council. 1994. Information
Technology in the Service Society. Washington DC:
National Academy Press.
Overview of IT's impact on the sector that accounts for
the majority of value-added in the US economy
National Research Council. 1997. For
the Record: Protecting Electronic Health Information.
Washington DC: National Academy Press
A comprehensive study of healthcare privacy practices,
that set the foundation for the HIPAA security regulations
Office of Technology Assessment. 1993. Protecting
Privacy in Computerized Medical Information. Washington
DC: US Government Printing Office.
An early analysis, of the usual high quality one associates
with OTA reports
Office of Technology Assessment. 1994. Information
Security and Privacy in Network Environments. Washington
DC: US Government Printing Office.
- Another high-quality, albeit now somewhat dated discussion
of the data protection challenges raised by computer networks
Office of Technology Assessment. 1995a.
Bringing
Health Care Online: The Role of Information Technologies.
Washington DC: US Government Printing Office.
A good overview of the issues
Organization for Economic Cooperation and
Development. 1980. Guidelines
on the Protection of Privacy and Transborder Flows of Personal
Data.
Another important early statement of fair information practices;
in Europe, unlike in the US, these explorations led to comprehensive,
trans-sectoral privacy laws
Privacy Protection Study Commission. 1977.
Personal Privacy in an Information Society. Washington
DC: US Government Printing Office.
Prosser, William O. 1960. "Privacy" California
Law Review 48(3):383-423.
A classic four-part categorization of privacy -- the right
to be freedom from unwanted intrusion, from revelation of
embarrasing privacy facts, from false light, and from identity
misappropriation
Regan, Priscilla M. 1995. Legislating
Privacy: Technology, Social Values and Public Policy.
Chapel Hill NC: University of North Carolina Press.
An excellent introduction to privacy law in the US, which
Regan has divided into information, communications and psychological
categories; also includes material on history and philosophy
of privacy in the US
Schwartz, Paul. 1995a. "Privacy and Participation:
Personal Information and Public Sector Regulation in the United
States" Iowa Law Review 80:553-618.
Schwartz, Paul. 1995b. "European Data Protection
Law and Restrictions on International Data Flows" Iowa
Law Review 80:471-xxx.
Smith, Marcia S. 2003. "Internet
Privacy: Overview and Pending Legislation" Congressional
Research Service Report (RL-31408)
Sparrow, Malcolm. 1996. License to Steal.
New York, NY: Westview Press.
Stevens, Gina Marie. 2001. "Online
Privacy Protection: Issues and Developments" Congressional
Research Service Report (RL-30322)
Stevens, Gina Marie. 2003. "Privacy
Total Information Awareness Programs and Related Information
Access, Collection, and Protection Laws" Congressional
Research Service Report (RL-31730)
van den Hoven, M. J. 1995. Information
Technology and Moral Philosophy: Philosophical Explorations
in Computer Ethics Rotterdam: Ridderprint BV.
Warren, Samuel D. and Brandeis, Lewis D.
1890. "The Right to Privacy" Harvard Law Review 4:193.
One of the foundation documents of US privacy law, including
the famous statement of the "right to be let alone"
Westin, Alan F. 1977. Computers, Health
Records and Citizen's Rights New York NY: Petrocelli Books.
Workgroup for Electronic Data Interchange.
1992. Report to the Secretary of the Department of Health
and Human Services. Washington DC: US Government Printing
Office.
Last modified:
27-Mar-2006
|
