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June 26, 1996, Vol 275, No. 24 >
ARTICLE | June 26, 1996

The Public Health Information Infrastructure: Title and subTitle BreakA National Review of the Law on Health Information Privacy FREE

Lawrence O. Gostin, JD; Zita Lazzarini, JD, MPH; Verla S. Neslund, JD; Michael T. Osterholm, PhD, MPH
[+] Author Affiliations

The views expressed herein are those of the authors and do not necessarily reflect the official policy of the US Department of Health and Human Services, the Council of State and Territorial Epidemiologists, or the Carter Presidential Center.

Reprints: Lawrence O. Gostin, JD, Georgetown University Law Center, 600 New Jersey Ave NW, Washington, DC 20001.

Health Law and Ethics section editors: Lawrence O. Gostin, JD, the Georgetown/ Johns Hopkins University Program on Law and Public Health, Washington, DC, and Baltimore, Md; Helene M. Cole, MD, Contributing Editor, JAMA.


JAMA. 1996;275(24):1921-1927. doi:10.1001/jama.1996.03530480063042
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References

Our objectives were to review and analyze the laws in the 50 states, the District of Columbia, and Puerto Rico that regulate the acquisition, storage, and use of public health data and to offer proposals for reform of the laws on public health information privacy. Virtually all states reported some statutory protection for governmentally maintained health data for public health information in general (49 states), communicable diseases (42 states), and sexually transmitted diseases (43 states). State statutes permitted disclosure of data for statistical purposes (42 states), contact tracing (39 states), epidemiologic investigations (22 states), and subpoena or court order (14 states). The survey revealed significant problems that affect both the development of fair and effective public health information systems and the protection of privacy. Statutes may be silent about the degree of privacy protection afforded, confer weaker privacy protection to certain kinds of information, or grant health officials broad discretion

REFERENCES

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Institute of Medicine, Committee for the Study of the Future of Public Health. The Future of Public Health . Washington, DC: Institute of Medicine; 1988;.
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Thacker SB.  Historical development.  In: Teutsch SM, Churchill RE, eds. Principles and Practices of Public Health Surveillance . New York, NY: Oxford University Press; 1994;:3-17.
3 +
Hinman AR. Surveillance of communicable diseases. Presented at the 100th annual meeting of the American Public Health Association; November 15,1972; Atlantic City, NJ.
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Vital Statistics of the United States, 1958 . Washington, DC: Office of Vital Statistics; 1959;.
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Henderson DA.  Surveillance of smallpox. Int J Epidemiol . 1976;;5:19-28.
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Fenner F, Henderson DA, Arita I. Smallpox and Its Eradication . Geneva, Switzerland: World Health Organization; 1988;.
7 +
Centers for Disease Control.  Kaposi's sarcoma and Pneumocystis pneumonia among homosexual men—New York City and California. MMWR Morb Mortal Wkly Rep . 1981;;30:305-308.
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Masur H, Michelis MA, Greene JB, et al.  An outbreak of community-acquired Pneumocystis carinii pneumonia: initial manifestation of cellular immune dysfunction. N Engl J Med . 1981;;305:1431-1438.
9 +
Francis DP, Curran JW, Essex M.  Epidemic acquired immune deficiency syndrome: epidemiologic evidence for a transmissible agent. J Natl Cancer Inst . 1983;;71:1-4.
10 +
Hjelle B, Jenison S, Mertz G, et al.  Emergence of hanta-viral disease in the southwestern United States. West J Med . 1994;;161:467-473.
11 +
McGinnis JM, Foege WH.  Actual causes of death in the United States. JAMA . 1993;;270:2207-2212.
12 +
Siegel PZ, Waller MN, Frazier EL, Mariolis P.  Behavioral risk factor surveillance system: summary of data for 1991. MMWR Morb Mortal Wkly Rep . 1993;;42: 23-30.
13 +
US Dept of Health and Human Services. Final Report of the Task Force on the Privacy of Private-Sector Health Records . Rockville, Md: Kunitz & Associates; 1995;.
14 +
General Accounting Office. Automated Medical Records: Leadership Needed to Expedite Standards Development . Washington, DC: General Accounting Office; 1993;. GAO/IMTEC93-17.
15 +
Institute of Medicine. Health Data in the Information Age: Use, Disclosure, and Privacy . Washington, DC: National Academy of Sciences; 1994;.
16 +
Gostin LO, Turek-Brezina J, Powers M, et al.  Privacy and security of personal information in a new health care system. JAMA . 1993;;270:2487-2493.
17 +
General Accounting Office. Computers and Privacy: How Government Obtains, Verifies, Uses, and Protects Personal Data . Washington, DC: General Accounting Office; 1990;. GAO/IMTEC-90-70BR.
18 +
Workgroup for Electronic Data Interchange. Obstacles to EDI in the Current Health Care Infrastructure . Washington, DC: US Dept of Health and Human Services; 1992;.
19 +
Gostin LO.  Health information privacy. Cornell Law Rev . 1995;;80:101-184.
20 +
Lee PR.  From the Assistant Secretary for Health, US Public Health Service. JAMA . 1994;;272:1315.
21 +
National Center for Health Statistics. Public Use Data Tape: National Health Interview Survey, 1991 . Washington, DC: US Dept of Health and Human Services; 1993;.
22 +
Agency for Health Care Policy and Research. AHCPR Purpose and Programs . Washington, DC: US Dept of Health and Human Services; 1990;.
23 +
Annas GJ, Glantz LH, Roche PA. The Genetic Privacy Act and Commentary . Boston, Mass: Boston University School of Public Health; 1995;.
24 +
Reilly PR.  DNA banking. Am J Hum Genet . 1994;;55:32-33.
25 +
Gostin LO.  Genetic privacy. J Law Med Ethics . 1995;;23:320-330.
26 +
Centers for Disease Control and Prevention. National HIV Sero-surveillance Summary: Results Through 1992 . Atlanta, Ga: US Dept of Health and Human Services; 1994;;3.
27 +
Menck HR.  A preliminary study of National Cancer Data Base representatives: National Cancer Data Base annual review of patient care, 1993. Cancer News . 1993;; 47:1.
28 +
US Dept of Health and Human Services. The Childhood Immunization Initiative . Washington, DC: US Dept of Health and Human Services; 1994;.
29 +
Gostin LO, Lazzarini Z.  Childhood immunization registries: a national review of public health information systems and the protection of privacy. JAMA . 1995;;274: 1793-1799.
30 +
Smith S. National Center for Health Statistics data line .  Public Health Rep. 1993;;108:408-409.
31 +
Baker EL, Friede A, Moulton AD, Ross DA.  CDC's Information Network for Public Health Officials (INPHO): a framework for integrated public health information and practice. J Public Health Manage Pract . 1995;;1:43-47.
32 +
Graitcer PL, Burton AH.  The Epidemiologic Surveillance Project: a computer-based system for disease surveillance. Am J Prev Med . 1987;;3:123-127.
33 +
Centers for Disease Control.  National Electronic Telecommunications System for Surveillance—United States, 1990-91. MMWR Morb Mortal Wkly Rep . 1991;;40: 502-503.
34 +
US Dept of Health and Human Services. National Health and Nutrition Examination Survey III . Washington, DC: US Dept of Health and Human Services; 1994;.
35 +
Gostin LO.  The resurgent tuberculosis epidemic in the era of AIDS: reflections on public health, law, and society. Maryland Law Rev . 1995;;54:1-131.
36 +
Fox DM.  From TB to AIDS: value conflicts in reporting disease. Hastings Cent Rep . 1986;;16( (suppl) ):11-16.
37 +
World Medical Association. Declaration of Geneva, 1948; amended 1968.
38 +
World Medical Association. International Code of Medical Ethics, 1949.
39 +
Beauchamp TL, Childress JF. Principles of Biomedical Ethics . 4th ed. New York, NY: Oxford University Press; 1994;.
40 +
Bayer R. Private Acts, Social Consequences: AIDS and the Politics of Public Health . New Brunswick, NJ: Rutgers University Press; 1989;.
41 +
Bayer R, Toomey KE.  HIV prevention and the two faces of partner notification. Am J Public Health . 1992;;82:1158-1164.
42 +
Walzer M. Spheres of Justice: A Defense of Pluralism and Equality . New York, NY: Basic Books; 1983;.
43 +
Grad FP. Public Health Law Manual . 2nd ed. Washington, DC: American Public Health Association; 1990;.
44 +
Centers for Disease Control and Prevention.  Interstate measles transmission from a ski resort—Colorado, 1994. MMWR Morb Mortal Wkly Rep . 1994;;43:627-629.
45 +
Minkoff H, Willoughby A.  Pediatric HIV disease, zidovudine in pregnancy, and unblinding heelstick surveys: reframing the debate on prenatal HIV testing. JAMA . 1995;;274:1165-1168.
46 +
US Dept of Health, Education, and Welfare Secretary's Advisory Committee on Automated Personal Data Systems. Records, Computers, and the Rights of Citizens . Washington, DC: US Dept of Health, Education, and Welfare; 1973;.
47 +
Privacy Protection Study Commission. Personal Privacy in an Information Society . Washington, DC: Government Printing Office; 1977;.

Figures

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Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature

Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal

1 +
Institute of Medicine, Committee for the Study of the Future of Public Health. The Future of Public Health . Washington, DC: Institute of Medicine; 1988;.
2 +
Thacker SB.  Historical development.  In: Teutsch SM, Churchill RE, eds. Principles and Practices of Public Health Surveillance . New York, NY: Oxford University Press; 1994;:3-17.
3 +
Hinman AR. Surveillance of communicable diseases. Presented at the 100th annual meeting of the American Public Health Association; November 15,1972; Atlantic City, NJ.
4 +
Vital Statistics of the United States, 1958 . Washington, DC: Office of Vital Statistics; 1959;.
5 +
Henderson DA.  Surveillance of smallpox. Int J Epidemiol . 1976;;5:19-28.
6 +
Fenner F, Henderson DA, Arita I. Smallpox and Its Eradication . Geneva, Switzerland: World Health Organization; 1988;.
7 +
Centers for Disease Control.  Kaposi's sarcoma and Pneumocystis pneumonia among homosexual men—New York City and California. MMWR Morb Mortal Wkly Rep . 1981;;30:305-308.
8 +
Masur H, Michelis MA, Greene JB, et al.  An outbreak of community-acquired Pneumocystis carinii pneumonia: initial manifestation of cellular immune dysfunction. N Engl J Med . 1981;;305:1431-1438.
9 +
Francis DP, Curran JW, Essex M.  Epidemic acquired immune deficiency syndrome: epidemiologic evidence for a transmissible agent. J Natl Cancer Inst . 1983;;71:1-4.
10 +
Hjelle B, Jenison S, Mertz G, et al.  Emergence of hanta-viral disease in the southwestern United States. West J Med . 1994;;161:467-473.
11 +
McGinnis JM, Foege WH.  Actual causes of death in the United States. JAMA . 1993;;270:2207-2212.
12 +
Siegel PZ, Waller MN, Frazier EL, Mariolis P.  Behavioral risk factor surveillance system: summary of data for 1991. MMWR Morb Mortal Wkly Rep . 1993;;42: 23-30.
13 +
US Dept of Health and Human Services. Final Report of the Task Force on the Privacy of Private-Sector Health Records . Rockville, Md: Kunitz & Associates; 1995;.
14 +
General Accounting Office. Automated Medical Records: Leadership Needed to Expedite Standards Development . Washington, DC: General Accounting Office; 1993;. GAO/IMTEC93-17.
15 +
Institute of Medicine. Health Data in the Information Age: Use, Disclosure, and Privacy . Washington, DC: National Academy of Sciences; 1994;.
16 +
Gostin LO, Turek-Brezina J, Powers M, et al.  Privacy and security of personal information in a new health care system. JAMA . 1993;;270:2487-2493.
17 +
General Accounting Office. Computers and Privacy: How Government Obtains, Verifies, Uses, and Protects Personal Data . Washington, DC: General Accounting Office; 1990;. GAO/IMTEC-90-70BR.
18 +
Workgroup for Electronic Data Interchange. Obstacles to EDI in the Current Health Care Infrastructure . Washington, DC: US Dept of Health and Human Services; 1992;.
19 +
Gostin LO.  Health information privacy. Cornell Law Rev . 1995;;80:101-184.
20 +
Lee PR.  From the Assistant Secretary for Health, US Public Health Service. JAMA . 1994;;272:1315.
21 +
National Center for Health Statistics. Public Use Data Tape: National Health Interview Survey, 1991 . Washington, DC: US Dept of Health and Human Services; 1993;.
22 +
Agency for Health Care Policy and Research. AHCPR Purpose and Programs . Washington, DC: US Dept of Health and Human Services; 1990;.
23 +
Annas GJ, Glantz LH, Roche PA. The Genetic Privacy Act and Commentary . Boston, Mass: Boston University School of Public Health; 1995;.
24 +
Reilly PR.  DNA banking. Am J Hum Genet . 1994;;55:32-33.
25 +
Gostin LO.  Genetic privacy. J Law Med Ethics . 1995;;23:320-330.
26 +
Centers for Disease Control and Prevention. National HIV Sero-surveillance Summary: Results Through 1992 . Atlanta, Ga: US Dept of Health and Human Services; 1994;;3.
27 +
Menck HR.  A preliminary study of National Cancer Data Base representatives: National Cancer Data Base annual review of patient care, 1993. Cancer News . 1993;; 47:1.
28 +
US Dept of Health and Human Services. The Childhood Immunization Initiative . Washington, DC: US Dept of Health and Human Services; 1994;.
29 +
Gostin LO, Lazzarini Z.  Childhood immunization registries: a national review of public health information systems and the protection of privacy. JAMA . 1995;;274: 1793-1799.
30 +
Smith S. National Center for Health Statistics data line .  Public Health Rep. 1993;;108:408-409.
31 +
Baker EL, Friede A, Moulton AD, Ross DA.  CDC's Information Network for Public Health Officials (INPHO): a framework for integrated public health information and practice. J Public Health Manage Pract . 1995;;1:43-47.
32 +
Graitcer PL, Burton AH.  The Epidemiologic Surveillance Project: a computer-based system for disease surveillance. Am J Prev Med . 1987;;3:123-127.
33 +
Centers for Disease Control.  National Electronic Telecommunications System for Surveillance—United States, 1990-91. MMWR Morb Mortal Wkly Rep . 1991;;40: 502-503.
34 +
US Dept of Health and Human Services. National Health and Nutrition Examination Survey III . Washington, DC: US Dept of Health and Human Services; 1994;.
35 +
Gostin LO.  The resurgent tuberculosis epidemic in the era of AIDS: reflections on public health, law, and society. Maryland Law Rev . 1995;;54:1-131.
36 +
Fox DM.  From TB to AIDS: value conflicts in reporting disease. Hastings Cent Rep . 1986;;16( (suppl) ):11-16.
37 +
World Medical Association. Declaration of Geneva, 1948; amended 1968.
38 +
World Medical Association. International Code of Medical Ethics, 1949.
39 +
Beauchamp TL, Childress JF. Principles of Biomedical Ethics . 4th ed. New York, NY: Oxford University Press; 1994;.
40 +
Bayer R. Private Acts, Social Consequences: AIDS and the Politics of Public Health . New Brunswick, NJ: Rutgers University Press; 1989;.
41 +
Bayer R, Toomey KE.  HIV prevention and the two faces of partner notification. Am J Public Health . 1992;;82:1158-1164.
42 +
Walzer M. Spheres of Justice: A Defense of Pluralism and Equality . New York, NY: Basic Books; 1983;.
43 +
Grad FP. Public Health Law Manual . 2nd ed. Washington, DC: American Public Health Association; 1990;.
44 +
Centers for Disease Control and Prevention.  Interstate measles transmission from a ski resort—Colorado, 1994. MMWR Morb Mortal Wkly Rep . 1994;;43:627-629.
45 +
Minkoff H, Willoughby A.  Pediatric HIV disease, zidovudine in pregnancy, and unblinding heelstick surveys: reframing the debate on prenatal HIV testing. JAMA . 1995;;274:1165-1168.
46 +
US Dept of Health, Education, and Welfare Secretary's Advisory Committee on Automated Personal Data Systems. Records, Computers, and the Rights of Citizens . Washington, DC: US Dept of Health, Education, and Welfare; 1973;.
47 +
Privacy Protection Study Commission. Personal Privacy in an Information Society . Washington, DC: Government Printing Office; 1977;.

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