Given the profound stigma that surrounded AIDS in the epidemic's first years, and the extent to which individuals with or at risk for HIV feared the social consequences of having their diagnoses made public, it is not surprising that confidentiality of AIDS-related information assumed great salience. From the pragmatic perspective of the public health officials, it was crucial to preserve confidentiality as a way of assuring that those at risk would come forward for testing and counseling (Institute of Medicine). Others objected on grounds of principle. Privacy was a value that should not be lightly set aside.

But however central were the claims of privacy and the duty to protect confidentiality, they were not absolutes. One of the conventionally accepted limits to those claims occurred when individuals with infectious diseases were reported by name to confidential public health registries. It was thus not surprising that despite concerns about privacy, little opposition existed in the epidemic's first years to making AIDS cases reportable by name (Bayer, 1989). The acceptance of AIDS case reporting requirements was facilitated by the well-established record of state health departments in protecting such records from unwarranted disclosure.

With the inception of HIV testing, however, debate emerged about whether the names of all infected persons, regardless of whether they had received an AIDS diagnosis, should be reported. Activists who accepted AIDS case reporting opposed HIV reporting because of heightened concerns about privacy, confidentiality, and discrimination. For them the potential public health benefits of reporting were too limited and the burden on those who would be the subject of reporting too great to justify an abrogation of privacy.

While many public health officials, especially those who came from states with large AIDS caseloads, opposed HIV reporting because of its potential effect on the willingness of people to seek testing and counseling, some public health officials did become strong advocates of such reporting. In their arguments in favor of such reporting, they sought to underscore the extent to which the public health benefits of HIV reporting would be similar to those that followed from more broadly conceived reporting requirements, such as those that applied to syphilis, tuberculosis, and AIDS itself (Vernon).

As therapeutic advances began to emerge in the late 1980s, and as the logic of distinguishing between HIV and AIDS became increasingly difficult to sustain, fissures began to appear in the relatively broad and solid alliance against named HIV reporting. At the end of November 1990, the CDC declared its support for HIV reporting, which it asserted could "enhance the ability of local, state and national agencies to project the level of required resources" for care and prevention services (CDC, 1990, p. 861). The House of Delegates of the American Medical Association also endorsed the reporting of names (Bayer, 1999).

Central to the argument for HIV name reporting was the assertion that AIDS case reporting captured an epidemic that was as much as a decade old and that an accurate picture of the incidence and prevalence of HIV infection--especially in light of the impact of treatment--required a surveillance system based on HIV case reporting.

At the end of 1999, in the face of lingering opposition from most AIDS activists, the CDC finally proposed that all states put in place an HIV reporting system. And while it left open the possibility of reliance on unique identifiers that met strict performance criteria, it was clear that the use of names was viewed as preferable (CDC, 1999). Remarkably, of those states that adopted HIV case surveillance after the publication of the CDC's recommendations, virtually all adopted coded systems. By 2002 only one state--Georgia--had not adopted some form of HIV reporting.

Bibliography:

1)         Bayer, Ronald. 1989. Private Acts, Social Consequences: AIDS and the Politics of Public Health. New Brunswick, NJ: Rutgers University Press.

2)         Bayer, Ronald. 1999. "Clinical Progress and the Future of HIV Exceptionalism." Archives of Internal Medicine 159: 1042-1048.

3)         Centers for Disease Control and Prevention. 1990. "Current Trends Update: Public Health Surveillance for HIV Infection: United States, 1989 and 1990." Morbidity and Mortality Weekly Report 39(47): 853, 859-861.

4)         Centers for Disease Control and Prevention. 1999. "Guidelines for National Human Immunodeficiency Virus Case Surveillance, Including Monitoring for Human Immunodeficiency Virus Infection and Acquired Immunodeficiency Syndrome." Morbidity and Mortality Weekly Report 48(13): 1-28.

5)         Vernon, Thomas. 1986. "Remarks." In AIDS: Impact on Public Policy, ed. Robert Hummell, W. Leavy, R. Rampola, et al. New York: Plenum.

6)         U.S. Institute of Medicine. 1986. Confronting AIDS: Directions for Public Health, Health Care, and Research. Washington, D.C.: National Academy Press.

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