Exceptionalism and the Ethics of Testing Reporting and Partner Notification

In the early and mid-1980s, at the outset of the American encounter with AIDS, it was necessary to face a set of fundamental questions: Did the history of responses to lethal infectious diseases provide lessons about how best to contain the spread of HIV? Should the policies developed to control sexually transmitted diseases or other communicable conditions be applied to AIDS? If AIDS were not to be so treated, what would justify such differential policies?

To understand the importance of these questions, it is necessary to recall that conventional approaches to public health threats typically provided a warrant, when deemed appropriate, for mandating compulsory examination and screening, breaching the confidentiality of the clinical relationship by reporting to public health registries the names of those diagnosed with "dangerous diseases," imposing treatment, and in the most extreme cases, confining persons through the power of quarantine. To be sure, many aspects of this public health tradition, forged at the outset of the twentieth century, had been modulated over the decades, in part because of changes in the patterns of morbidity and mortality.

Nevertheless, it was the specter of the historically coercive aspects of the public health tradition that most concerned proponents of civil liberties and advocates of gay rights and bioethics as they considered the potential direction of public health policy in the presence of AIDS, a disease that so disproportionately affected disfavored groups— gay men, drug users, the poor in minority communities. In place of the conventional approach to public health threats, there emerged an alternative view—broadly defined as exceptionalism (Bayer, 1991)—that took as its starting point the need to craft policies that were persuasive rather than coercive, which viewed the protection of the rights of those who were infected as integral rather than as antagonistic to the goals of disease prevention. For those who advanced this new perspective, privacy and confidentiality were to be accorded great importance. In all, the goal was to avoid measures and practices that might be counterproductive, which might "drive the epidemic underground" by inspiring fear and distrust rather than fostering engagement between public health officials and those most at risk. How the exceptionalist perspective with its commitment to noncoercive approaches to HIV affected policy is most clearly illustrated in the debates over HIV testing, reporting of HIV, and partner notification efforts.

HIV TESTING. 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.

REPORTING OF HIV. A course similar to that which occurred with testing characterized the debate surrounding case reporting for HIV infection. 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.

PARTNER NOTIFICATION. In the controversy over partner notification the limits of privacy were also encountered. What emerged as a source of contention in the first decade of the epidemic was the extent to which the protection of identifiable third parties who had been or were currently placed at risk for HIV by already infected individuals provided a warrant for public health interventions. This was not a new issue; it had been confronted in the context of psychiatry in the so-called Tarasoff doctrine (from the mid-1970s court case, Tarasoff v. Regents of the University of California), which held that physicians who knew that their patients were about to inflict serious harm on other identifiable individuals had a duty to act to warn or protect. While opinions differed about the wisdom of such efforts, there was little principled objection to breaching confidentiality under such circumstances.

Thus in the mid- to late 1980s, when many AIDS activists argued that the principle of confidentiality had to be inviolable, and when public health officials were loath to endorse legislative mandates requiring third party notification, many ethicists suggested that protection of unsuspecting sexual partners took precedence over privacy. In 1988 the American Medical Association's House of Delegates embraced the duty to warn.

Some states sought to meet the challenge of endangered third parties by enacting statutes that secured a "privilege to disclose." Under such laws physicians could, if they chose, breach confidentiality to warn unsuspecting individuals but would not be held liable if they failed to do so.

The depth of antagonism to public health interventions in matters of sexual intimacy was further demonstrated by the deep suspicion of contact tracing programs, under which public health officials would notify those who had been placed at risk without divulging the identity of the individual who had imposed the risk. Such efforts were typically voluntary and relied on the willingness of index patients to provide the names of their contacts.

Despite the four decades of experience with contact tracing, efforts to undertake such public health interventions in the context of AIDS met with fierce resistance in the first years of the epidemic. Opposition by gay leaders and civil liberties groups had a profound impact on the response of public health officials, especially in states with relatively large numbers of AIDS cases, where contact tracing efforts remained all but moribund (Bayer, 1989). In part the opposition was fueled by the fact that throughout most of the 1980s, no therapy could be offered to asymptomatic infected individuals. Thus, the role of contact tracing in the context of HIV infection differed radically from its role in the context of other sexually transmitted diseases. In the latter case, effective treatments could be offered to notified partners. Once cured, such individuals would no longer pose a threat of transmission. In the case of HIV, nothing could be offered other than information about possible exposure.

Public health officials saw in such information an opportunity to target efforts to foster behavioral changes among individuals still engaging in high-risk behavior— behavior that could place both the individual contacted and future partners at risk; for such officials, this was reason enough to undertake the process. For opponents of contact tracing, the very effort to reach out to such individuals represented a profound intrusion on privacy with little or no compensating benefit. The task of behavioral change, they asserted, could be achieved more effectively and efficiently through community-based HIV prevention efforts (Bayer and Toomey).

Early misapprehensions about the extent to which public health officials typically relied on overt coercion in the process of contact tracing, and the degree to which confidentiality might be compromised, had by the end of the 1980s all but vanished. With such concerns allayed, many gay leaders had come to recognize that partner notification, in fact, could be a "useful tool" in efforts to control AIDS (Schram). The debate began to shift to one centered on relative efficacy (APHA). That dispute was informed by questions that had already surfaced about the usefulness of contact tracing in the control of syphilis in populations where individuals had large numbers of sexual partners, many of whom were anonymous (Andrus et al.).

In short, by the early 1990s the exceptionalism of the first years of the AIDS epidemic began to fade and a process of normalization had set in.

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