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From the moment of its introduction in 1985, the HIV test became the subject of intense debate. Fear that those identified as having HIV might be subject to discrimination and stigma; concern about how the diagnosis of HIV infection, in the absence of effective therapy, could produce unbearable psychological burdens; and a belief that testing had little to do with behavioral change led AIDS activists generally, and gay leaders specifically, to adopt a posture of hostility and/or skepticism regarding the test. On the other hand, many public health officials believed that the identification of infected persons could play a crucial role in fostering behavioral change. Out of their confrontations emerged a broad consensus that, except in a very few well-defined circumstances, people should be tested only with their informed, voluntary, and specific consent (Bayer, 1989).

Much of the early discussion of HIV testing occurred in the context of extreme therapeutic limits. And indeed in the epidemic's early years the primary function of testing was as an adjunct to prevention efforts. By 1990, as a result of clinical developments--the belief that treatment with zidovudine (also known as azidothymidine, or AZT) could delay the onset of symptomatic AIDS and the recognition of the importance of primary prophylaxis against Pneumocystis carinii pneumonia--the medical significance of identifying those with early HIV disease had become clear. Consequently, the clinical and political context--involving a wide range of constituencies--of the debate about testing underwent a fundamental change (Bayer, Levine, and Wolf ). Gay organizations began to urge homosexual and bisexual men to have their antibody status determined under confidential or anonymous conditions. Physicians pressed for AIDS to be incorporated into the medical mainstream and for the HIV-antibody test to be treated like other blood tests--that is, given with the presumed consent of the patient.

Pressure to shift the paradigm of testing away from the exacting standard of informed consent was especially pronounced in the case of pregnant women and newborns (Bayer, 1995). Diagnostic progress was to make it possible to determine whether HIV-positive newborns were truly infected soon after birth, and the improved prospects of clinical management were to make such determinations for infected infants appear all the more critical. So it is not surprising that pediatricians became increasingly impatient with the strict regimen of explicit and specific consent that surrounded the testing of newborns for HIV (Hegearty and Abrams)--all the more so because routine and unconsented testing of newborns for inborn errors of metabolism such as phenylketonuria was mandated in virtually every state and had provoked little ethical objection.

In 1994 a research study discovered that the administration of zidovudine during pregnancy could reduce the rate of maternal-fetal HIV transmission by two-thirds (to about 8%) (Connor, Sperling, and Gelber). In the aftermath of that finding, pressure mounted to ensure that infected women were identified early in pregnancy. In 1996 the American Medical Association's House of Delegates passed a resolution calling for mandatory testing of pregnant women (Shelton). Even the Institute of Medicine, which early in the epidemic had opposed testing policies that abrogated the privacy rights of pregnant women, was by the end of the 1990s to endorse routine testing on the basis of an informed right of refusal, a much less exacting standard than specific informed consent (Institute of Medicine).

In other contexts as well, the retreat from the exacting standard of specific informed consent with pretest counseling has taken the form of efforts to integrate HIV testing into clinical practice where standards of presumed consent prevail.

References:

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

2)         Bayer, Ronald. 1995. "Women's Rights, Babies' Interests: Ethics, Politics, and Science in the Debate of Newborn HIV Screening." In HIV Infection in Women, ed. Howard L. Minkoff, Jack A. DeHovitz, and Ann Duerr. New York: Raven Press.

3)         Bayer, Ronald; Levine, Carol; and Wolf, Susan M. 1986. "HIV Antibody Screening: An Ethical Framework for Evaluation Proposed Programs." Journal of the American Medical  Association 256(13): 1768-1774.

4)         Connor, Edward M.; Sperling, Rhoda S.; Gelber, Richard; et al. 1994. "Reduction in Maternal-Infant Transmission of HIV Type 1 with Zidovudine Treatment." New England Journal of Medicine 331(18): 1173-1180.

5)         Hegearty, Margaret, and Abrams, Elaine. 1992. "Caring for HIV-Infected Women and Children." New England Journal of Medicine 326(13): 887-888.

6)         Shelton, D. L. 1996. "Delegates Push Mandatory HIV Testing for Pregnant Women: American Medical Association House of Delegates Vote: Annual Meeting News." American Medical News 31: 1.

7)         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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