Health Care Analysis

, Volume 9, Issue 3, pp 321–335 | Cite as

Health Information: Reconciling Personal Privacy with the Public Good of Human Health

  • Lawrence O. Gostin


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

ethics health information privacy public health 


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  1. Allen, A.L. (1987) Uneasy Access: Privacy for Women in a Free Society.Google Scholar
  2. Baker v. Howard, 419 F.2d 376 (9th Cir. 1969).Google Scholar
  3. Barry v. City of New York, 712 F.2d 1554, 1560 (2d Cir. 1983).Google Scholar
  4. Bowers v. Hardwick, 478 U.S. 186 (1986).Google Scholar
  5. Brock, D.W. and Daniels, N. (1994) Ethical Foundations of the Clinton Administration's Proposed Health Care System. JAMA 271, 1189.PubMedCrossRefGoogle Scholar
  6. Carter v. Broadlawns Medical Ctr., 667 F. Supp. 1269 (S.D. Iowa 1987).Google Scholar
  7. Chlapowski, F.S. (1991) Note. The Constitutional Protection of Informational Privacy. B. U. L. Rev. 71, 133.Google Scholar
  8. Committee on Regional Health Data Networks, National Academy of Sciences (1994) Health Data in the Information Age: Use, Disclosure, and Privacy, 72-73.Google Scholar
  9. Commonwealth v. Alger, 7 Cush. 53 (Mass. 1851).Google Scholar
  10. Congressional Office of Technology Assessment (1993) Protecting Privacy in Computerized Medical Information. OTA-TCT-576, 51-87.Google Scholar
  11. Congressional Office of Technology Assessment (1988) The Quality of Medical Care: Information for Consumers, OTA-II-386.Google Scholar
  12. Congressional Office of Technology Assessment (1986) Federal Government Information Technology: Electronic Record Systems and Individual Privacy. OTA-CIT-296.Google Scholar
  13. Daniels, N. (1985) Just Health Care.Google Scholar
  14. Doe v. Borough of Barrington, 729 F. Supp. 376 (D.N.J. 1990).Google Scholar
  15. 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.Google Scholar
  16. Dougherty, C.J. (1992) Ethical Values at Stake in Health Care Reform. JAMA 268, 2409.PubMedCrossRefGoogle Scholar
  17. Fleming et al. (1993) A Decision Analysis of Alternative Treatment Strategies for Clinically Localized Prostate Cancer. JAMA 269, 2650.PubMedCrossRefGoogle Scholar
  18. Gostin, L.O. (2001) National Health Information Privacy: Regulations Under the Health Insurance Portability and Accountability Act. J. Amer. Med. Assn. 285, 3015.CrossRefGoogle Scholar
  19. Gostin, L.O. (2000) Public Health Law: Power, Duty, Restraint.Google Scholar
  20. 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.Google Scholar
  21. 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.PubMedGoogle Scholar
  22. Hosch III, H.C. (1983) Note, The Interest in Limiting the Disclosure of Personal Information: A Constitutional Analysis. Vand. L. Rev. 36, 139.Google Scholar
  23. Information Management and Technology Division, General Accounting Office (1993) Automated Medical Records: Leadership Needed to Expedite Standards Development. GAO/IMTEC-93-17.Google Scholar
  24. 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.Google Scholar
  25. 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.Google Scholar
  26. Institute of Medicine (1988) The Future of Public Health, 19, 36-38.Google Scholar
  27. Jacobson v. Massachusetts, 197 U.S. 11 (1905).Google Scholar
  28. Kreimer, S.F. (1991) Sunlight, Secrets, and Scarlet Letters: The Tension Between Privacy and Disclosure in Constitutional Law. Pa. L. Rev. 140, 1.Google Scholar
  29. Last, J.M. (1991) Epidemiology and Ethics. Law, Med. and Health Care 19, 166.Google Scholar
  30. Lu-Yao, Grace L. et al. (1993) An Assessment of Radical Prostatectomy: Time Trends, Geographic Variation, and Outcomes. JAMA 269, 2633.PubMedCrossRefGoogle Scholar
  31. Melton, III, L.J. (November 13, 1997) The Threat to Medical-Records Research. New Engl. J. Med. 337, 1466.Google Scholar
  32. Nixon v. Administrator of General Services, 433 U.S. 425 (1977).Google Scholar
  33. Paul v. Davis, 424 U.S. 693 (1976).Google Scholar
  34. Physician Payment Review Comm'n, Annual Report to Congress (1994), 311-22.Google Scholar
  35. Physician Payment Review Comm'n, Annual Report to Congress (1993), 27-54.Google Scholar
  36. Physician Payment Review Comm'n, Annual Report to Congress (1992), 263-282.Google Scholar
  37. Planned Parenthood v. Danforth, 428 U. S. 52, 80 (1976).Google Scholar
  38. Rasmussen v. South Fla. Blood Serv. Inc., 500 So. 2d 533, 536 (Fla. 1987).Google Scholar
  39. Roper, W.L. et al. (1988) Effectiveness in Health Care: An Initiative to Evaluate and Improve Medical Practice. New Eng. J. Med. 319, 1197.PubMedCrossRefGoogle Scholar
  40. Schacter v. Whalen, 581 F.2d 35, 37 (2d Cir. 1978).Google Scholar
  41. Smith, R.E. (1981) Compilation of State and Federal Privacy Laws, 17-18.Google Scholar
  42. Soroka v. Dayton Hudson Corp., 1 Cal. Rptr. 2d 77, 83 (Ct. App. 1991).Google Scholar
  43. Task Force on Privacy, U.S. Dep't of Health and Human Servs. (1993) Health Records: Social Needs and Personal Privacy: Conference Proceedings.Google Scholar
  44. Task Force on the Privacy of Private Sector Health Records, U.S. Dep't of Health and Human Servs. (1995).Google Scholar
  45. 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.Google Scholar
  46. United States v. Westinghouse Electric Corp., 638 F.2d 570 (3d Cir. 1980).Google Scholar
  47. Walzer, M. (1982) Spheres of Justice: A Defense of Pluralism and Equality, 64-91.Google Scholar
  48. Webster v. Reproductive Health Servs., 492 U.S. 490 (1989).Google Scholar
  49. Westin, A.F. et al. (1993) Health Care Information Privacy: A Survey of the Public and Leaders, 23.Google Scholar
  50. Westin, A.F. (1976) U.S. Dep't of Commerce, Pub. No. 500-50, Computers, Health Records, and Citizen Rights.Google Scholar
  51. Westin, A.F. (1967) Privacy and Freedom.Google Scholar
  52. Whalen v. Roe, 429 U.S. 589 (1977).Google Scholar
  53. Woods v. While, 689 F. Supp. 874 (W.D. Wis. 1988).Google Scholar
  54. Work Group on Computerization of Patient Records, U.S. Dep't of Health and Human Servs. (1993) Toward a National Health Information Infrastructure.Google Scholar
  55. York v. Story, 324 E2d 450 (9th Cir. 1963).Google Scholar

Copyright information

© Kluwer Academic Publishers 2001

Authors and Affiliations

  • Lawrence O. Gostin
    • 1
    • 2
  1. 1.Georgetown UniversityWashingtonUSA
  2. 2.CDC-Collaborating Center for Law and the Public's HealthThe Johns Hopkins UniversityUSA

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