Abstract
The success of the health care system depends on the accuracy, correctness and trustworthiness of the information, and the privacy rights of individuals to control the disclosure of personal information. A national policy on health informational privacy should be guided by ethical principles that respect individual autonomy while recognizing the important collective interests in the use of health information. At present there are no adequate laws or constitutional principles to help guide a rational privacy policy. The laws are scattered and fragmented across the states. Constitutional law is highly general, without important specific safeguards. Finally, a case study is provided showing the important trade-offs that exist between public health and privacy. For a model public health law, see www.critpath.org/msphpa/privacy.
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References
Allen, A.L. (1987) Uneasy Access: Privacy for Women in a Free Society.
Baker v. Howard, 419 F.2d 376 (9th Cir. 1969).
Barry v. City of New York, 712 F.2d 1554, 1560 (2d Cir. 1983).
Bowers v. Hardwick, 478 U.S. 186 (1986).
Brock, D.W. and Daniels, N. (1994) Ethical Foundations of the Clinton Administration's Proposed Health Care System. JAMA 271, 1189.
Carter v. Broadlawns Medical Ctr., 667 F. Supp. 1269 (S.D. Iowa 1987).
Chlapowski, F.S. (1991) Note. The Constitutional Protection of Informational Privacy. B. U. L. Rev. 71, 133.
Committee on Regional Health Data Networks, National Academy of Sciences (1994) Health Data in the Information Age: Use, Disclosure, and Privacy, 72-73.
Commonwealth v. Alger, 7 Cush. 53 (Mass. 1851).
Congressional Office of Technology Assessment (1993) Protecting Privacy in Computerized Medical Information. OTA-TCT-576, 51-87.
Congressional Office of Technology Assessment (1988) The Quality of Medical Care: Information for Consumers, OTA-II-386.
Congressional Office of Technology Assessment (1986) Federal Government Information Technology: Electronic Record Systems and Individual Privacy. OTA-CIT-296.
Daniels, N. (1985) Just Health Care.
Doe v. Borough of Barrington, 729 F. Supp. 376 (D.N.J. 1990).
Donaldson, M.S. and Lohr, K.N. (Eds.), Committee on Regional Health Data Networks, National Academy of Sciences (1994) Health Data in the Information Age: Use, Disclosure, and Privacy.
Dougherty, C.J. (1992) Ethical Values at Stake in Health Care Reform. JAMA 268, 2409.
Fleming et al. (1993) A Decision Analysis of Alternative Treatment Strategies for Clinically Localized Prostate Cancer. JAMA 269, 2650.
Gostin, L.O. (2001) National Health Information Privacy: Regulations Under the Health Insurance Portability and Accountability Act. J. Amer. Med. Assn. 285, 3015.
Gostin, L.O. (2000) Public Health Law: Power, Duty, Restraint.
Gostin, L.O. and Hadley, J. (November 15, 1998) Health Services Research: Public Benefits, Personal Privacy, and Proprietary Interests. Annals of Internal Med. 129, 833.
Gostin, L.O. (1993) The Americans with Disabilities Act and the Corpus of Anti-Discrimination Law: A Force for Change in the Future of Public Health Regulation. Health Matrix 3, 89.
Hosch III, H.C. (1983) Note, The Interest in Limiting the Disclosure of Personal Information: A Constitutional Analysis. Vand. L. Rev. 36, 139.
Information Management and Technology Division, General Accounting Office (1993) Automated Medical Records: Leadership Needed to Expedite Standards Development. GAO/IMTEC-93-17.
Information Management and Technology Division, General Accounting Office (1993) Health Care Information Systems: National Practitioner Data Bank Continues to Experience Problems, GAO/IMTEC-93-1.
Information Management and Technology Division, General Accounting Office (1991) Medical ADP Systems: Automated Medical Records Hold Promise to Improve Patient Care, GAO/IMTEC-91-5.
Institute of Medicine (1988) The Future of Public Health, 19, 36-38.
Jacobson v. Massachusetts, 197 U.S. 11 (1905).
Kreimer, S.F. (1991) Sunlight, Secrets, and Scarlet Letters: The Tension Between Privacy and Disclosure in Constitutional Law. Pa. L. Rev. 140, 1.
Last, J.M. (1991) Epidemiology and Ethics. Law, Med. and Health Care 19, 166.
Lu-Yao, Grace L. et al. (1993) An Assessment of Radical Prostatectomy: Time Trends, Geographic Variation, and Outcomes. JAMA 269, 2633.
Melton, III, L.J. (November 13, 1997) The Threat to Medical-Records Research. New Engl. J. Med. 337, 1466.
Nixon v. Administrator of General Services, 433 U.S. 425 (1977).
Paul v. Davis, 424 U.S. 693 (1976).
Physician Payment Review Comm'n, Annual Report to Congress (1994), 311-22.
Physician Payment Review Comm'n, Annual Report to Congress (1993), 27-54.
Physician Payment Review Comm'n, Annual Report to Congress (1992), 263-282.
Planned Parenthood v. Danforth, 428 U. S. 52, 80 (1976).
Rasmussen v. South Fla. Blood Serv. Inc., 500 So. 2d 533, 536 (Fla. 1987).
Roper, W.L. et al. (1988) Effectiveness in Health Care: An Initiative to Evaluate and Improve Medical Practice. New Eng. J. Med. 319, 1197.
Schacter v. Whalen, 581 F.2d 35, 37 (2d Cir. 1978).
Smith, R.E. (1981) Compilation of State and Federal Privacy Laws, 17-18.
Soroka v. Dayton Hudson Corp., 1 Cal. Rptr. 2d 77, 83 (Ct. App. 1991).
Task Force on Privacy, U.S. Dep't of Health and Human Servs. (1993) Health Records: Social Needs and Personal Privacy: Conference Proceedings.
Task Force on the Privacy of Private Sector Health Records, U.S. Dep't of Health and Human Servs. (1995).
Turkington, R.C. (1990) Legacy of the Warren and Brandeis Article: The Emerging Unencumbered Constitutional Right to Informational Privacy. N. Ill. U. L. Rev. 10, 479.
United States v. Westinghouse Electric Corp., 638 F.2d 570 (3d Cir. 1980).
Walzer, M. (1982) Spheres of Justice: A Defense of Pluralism and Equality, 64-91.
Webster v. Reproductive Health Servs., 492 U.S. 490 (1989).
Westin, A.F. et al. (1993) Health Care Information Privacy: A Survey of the Public and Leaders, 23.
Westin, A.F. (1976) U.S. Dep't of Commerce, Pub. No. 500-50, Computers, Health Records, and Citizen Rights.
Westin, A.F. (1967) Privacy and Freedom.
Whalen v. Roe, 429 U.S. 589 (1977).
Woods v. While, 689 F. Supp. 874 (W.D. Wis. 1988).
Work Group on Computerization of Patient Records, U.S. Dep't of Health and Human Servs. (1993) Toward a National Health Information Infrastructure.
York v. Story, 324 E2d 450 (9th Cir. 1963).
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Gostin, L.O. Health Information: Reconciling Personal Privacy with the Public Good of Human Health. Health Care Analysis 9, 321–335 (2001). https://doi.org/10.1023/A:1012905932744
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DOI: https://doi.org/10.1023/A:1012905932744