Historically, as governments have confronted the challenge of epidemic disease, they have tended to rely on policies marked by an authoritarian perspective. Indeed, traditional public health practice in Europe and North America centered on mandatory reporting of cases to public health registries, contact tracing (identifying and notifying people who may have been exposed to HIV), compulsory treatment, and, at times, quarantine and isolation. The shape of public health practice was dictated by both the nature of the infectious threats and prevailing conceptions of the appropriate relationship between the individual and the state. AIDS has provided the occasion for a challenge to the traditional approach to public health practice.
As both a lethal illness spread in the context of the most intimate relationships and as a public health threat, AIDS has forced society to confront questions regarding the appropriate role of the state in limiting morbidity and mortality. In so doing, it has required a reconsideration of the ethical limits on state power in the face of a grave social threat. As a disease of the socially vulnerable, AIDS has also compelled society to face issues involving the role of the state in protecting the weak at moments of social stress. As a disease that has affected large numbers of poor individuals who do not possess adequate health insurance or who live in nations with limited health care systems, AIDS has required a reconsideration of what justice demands in terms of the protection of individuals versus the costs associated with illness. Thus, the roles of government in advancing the public health, defending the weak, and ensuring access to health care have all been called into question by the AIDS epidemic.
In the United States and in other nations bounded by the traditions of Western liberalism, ethical considerations, pragmatic concerns, and efforts on the part of AIDS service organizations have influenced public health strategies that control the spread of HIV infection. These strategies may be defined as voluntaristic, in that they stress mass education, counseling, and respect for privacy. Indeed, both in the United States and elsewhere a paradigm of what might be termed "HIV exceptionalism," or special treatment for AIDS as opposed to other infectious diseases, has dominated public health policy. A focus on voluntarism also informed the policies put forth by the Global Programme on AIDS at the World Health Organization, which, in turn, helped shape policies in nations around the world. This general consensus has affected policies on discrimination, the protection of confidentiality, and the use of the coercive powers of the state to restrict those whose behaviors are thought to pose a risk of HIV transmission.
Perhaps no ethical issue involving AIDS has received more attention than confidentiality. It has been viewed as crucial to protecting the privacy interests of those with HIV and as a way of encouraging such individuals to come forward for counseling and medical care. However, in light of pressing public health necessities, confidentiality is never absolute and is always subject to limits.
In many nations, a central responsibility of public health officials has been to record the names of those with certain diseases in special registries. In part, such reporting has been deemed necessary for purposes of epidemiological surveillance. On other occasions, reporting has been thought of as crucial to ensure that individuals with communicable conditions are appropriately treated. Finally, such reporting has been central to contact tracing. Where reporting by name does occur, the ethics of confidentiality dictate that the identity of those with AIDS be shielded from unwarranted disclosure. The reporting of names is justified on public health grounds alone. Disclosure to those with other motives for knowing the identities of individuals with HIV/AIDS is not ethically justifiable.
The role of confidentiality in the clinical setting is more complicated. It is not always clear what the moral responsibilities of a physician are when an HIV-infected patient refuses to inform identifiable, past or current partners about the dangers of infection. In the United States, a central legal doctrine emerged out of the widely discussed Tarasoff case, which held that, under certain circumstances, a clinician has an affirmative duty to warn or protect unsuspecting targets of his or her patient's harmful intentions. The underlying ethical principle is that other ethical values may supersede confidentiality. When vulnerable, unsuspecting persons are placed at risk, it may be necessary to breach confidentiality. However, there is a concern that if clinicians routinely report HIV-positive clients who have refused to inform past or current sexual partners, such clients may be less candid with their clinicians and thus less open to appropriate counseling.
The ethics of research is another major area of concern. The AIDS epidemic has produced a broad and potent political movement that has sought to reshape radically the conditions under which research is undertaken in the United States. Many of the major practices that have informed research ethics since the end of World War II have been brought into question, including the role of the randomized clinical trial, the importance of placebo controls, the central role of academic research institutions, the unquestioned authority of scientists over subjects, and the distinction between research and therapy.
In all these areas, AIDS has challenged the "protectionist" ethos, which views research as posing dangers or risks against which subjects need to be defended. In a reversal of policy developed since the Holocaust, which states that patients have a right not to be subjected to research, the absence of a cure or effective therapy for AIDS has promoted the notion of patients having a right to be involved in experimental research. That striking change has resulted in a rejection of the model of research conducted at remote academic centers, with restrictive (protective) standards of access and strict adherence to the "gold standard" of clinical trials, in which participants are randomly assigned to treatment and control conditions.
Blurring the distinction between research and treatment, those insistent upon radical reform have sought to open wide the points of entry to new "therapeutic" agents, both within and outside of clinical trials, arguing that "a drug trial is health care, too." Such activists have demanded an ethical regime informed by respect for the autonomous choice of potential subjects who can weigh for themselves the potential risks and benefits of new experimental treatments for HIV infection. Demands have been made that women be enrolled in trials in greater numbers, that prisoners and drug users be granted access, and that children be included in trials at a much earlier point than had been considered acceptable. Moreover, the revisionists have demanded a basic reconceptualization of the relationship between researchers and subjects. In place of protocols imposed from above, they have proposed a more egalitarian and democratic model, in which negotiation among all those involved would replace scientific authority.
The ethics of care is another major issue. Since the World War II era, health care workers in industrial societies have been largely shielded from what was the routine experience of those who had worked with the sick in prior eras: the acquisition of their patients' infections and sometimes lethal diseases. The resultant sense of invincibility was ruptured by AIDS, beginning in 1981.
Early in the history of the AIDS epidemic, anecdotal reports began to surface about hospital aides leaving food trays at the doors of those who were sick and of nurses, physicians, and dentists refusing to treat patients with the new disease. Confronted with the threat of patient abandonment, those committed to stanching the trend turned to history in hopes that a lesson on the responsibility of physicians would emerge. Physicians had, after all, been called upon to respond when epidemics were more common and when morbidity was much more severe. Those who had hoped to discover a single message from the past were disappointed. Although some physicians had stayed behind to care for their patients, many had fled.
When history provided no clear guidance, some looked to the codes of ethics that have expressed the aspirations of the guilds and associations of medical practitioners. Remarkably, such codes had been silent on the duty of physicians to treat in times of epidemics. In the United States, the American Medical Association (AMA) code of 1847 was unique in its forthright assertion of such a responsibility: "And when pestilence prevails, it is their duty to face the danger and to continue their labors for the alleviation of suffering, even at the jeopardy of their own lives." This provision remained in the code until 1957, when a revised and shortened statement eliminated the stipulation that must certainly have seemed an anachronism. After all, it was widely believed that the era of epidemics had come to an end in the advanced industrial world.
It was not until November 1987 that the AMA's Council on Ethical and Judicial Affairs ruled that "a physician may not ethically refuse to treat a patient whose condition is within the physician's current realm of competence solely because the patient is [HIV-] seropositive." In so doing, the AMA joined the American Nurses Association, which had a year earlier denounced discriminatory treatment of patients with AIDS.
For many who have stressed a universal obligation to treat, the relatively low risk of infection has been central. Were the risks of HIV transmission much greater, it would have required an ethics of heroism to insist that each health care worker bear the responsibility of ensuring adequate and appropriate care for the infected. Given the level of risk of HIV infection, even among surgeons and obstetricians, those who stressed the obligation to treat argued that it was not heroism but straightforward duty that was involved.
The issue of access to care is not, however, primarily raised by the specter of physician abandonment. Rather, it centers on the access the poor have to care. In the United States, which unlike other economically advanced nations does not guarantee access to health care for its citizens, there is a striking contrast between important clinical advances in the care of those with HIV infection and the social organization of American medicine. This contrast led a national commission on AIDS to warn in a December 1989 report to the president that medical breakthroughs would "mean little unless the health care system can incorporate them and make them accessible to people in need." The existence of a medically disenfranchised class meant that, for many, access to care was almost solely through hospital emergency rooms. Thus, AIDS raised, in a stark way, the question of justice in health care.
Clinical Trials; Confidentiality; Contact Tracing and Partner Notification; Disclosure; Discrimination; Epidemics, Historical; Ethics, Personal; Health Care Workers; Informed Consent; Insurance; Testing Debates
biomedical ethics, confidentiality, ethics, health care providers, informed consent, research, testing
Bayer, R., Private Acts, Social Consequences: AIDS and the Politics of Public Health, second edition, New Brunswick, New Jersey: Rutgers University Press, 1991
Bayer, R., "Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?" New England Journal of Medicine 324 (1991), pp. 1500-1504
Dickens, B., "Legal Limits of AIDS Confidentiality," Journal of the American Medical Association 259 (1988), pp. 3399-3451
Gostin, L., "The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part I: The Social Impact of AIDS," Journal of the American Medical Association 263 (1990), p. 1963
Levine, C., "Has AIDS Changed the Ethics of Human Subjects Research?," Law, Medicine and Health Care 16 (1988), pp. 167-173
Encyclopedia of AIDS $25 US/832 pp/Illustrated
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The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.