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AIDS: From Social History to Social Policy
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Screening for HIV

Although scientific knowledge about AIDS has grown at an exponential rate, much remains unknown. At the same time, AIDS presents a series of highly problematic social policy questions that demand answers even in the face of incomplete medical knowledge and widespread fear. AIDS makes explicit a central tension in our polity: the premium we place on the rights of the individual to fundamental civil liberties versus the notion of the public good and the role of the state in assuring public welfare. Both sets of values, highly prized in our culture, have necessarily been brought to bear in the AIDS crisis. In the course of the twentieth century civil liberties were expanded and strengthened in the courts, making the conflicts posed by AIDS even more contentious.

Nowhere is this more clearly seen than in the current debate about testing and screening for human immunodeficiency virus (HIV) antibody. The discovery of the enzyme-linked immunosorbent assay (ELISA test) not only made possible the screening of blood to preserve the quality of the blood supply, it also made it technically possible to identify individuals with HIV. Although many, especially in the gay community, have viewed the test with grave concern because of the potential for


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misuse in identifying and segregating, or even quarantining, individuals testing positive, others have viewed the test as the critical element in a campaign to stem the epidemic. The debate currently rages about the appropriate use of this test.

Beginning in late 1985 the U.S. Department of Defense announced that all new recruits for military service would be screened for HIV antibody and rejected if found to test positive. One justification of the screening program was that military personnel receive a wide variety of live-virus vaccinations that might cause serious disease in individuals whose immune systems were compromised. Military officials also contended that combat would provide a high risk for transmission of HIV, given that soldiers routinely serve as blood donors in the field. As Dorothy Porter and Roy Porter note in their chapter, the armed forces are typically the first to undergo massive screening for transmissible diseases. Although the military suggested that the screening program would maintain absolute confidentiality, in practice this may be difficult to achieve inasmuch as rejected candidates may suffer the stigma of HIV infection. Critics of the military screening program also argued that the test was being used to identify and remove gays from service.[28]

The military screening program was merely the first; many others have been proposed, from the mandatory screening of high-risk groups to premarital testing, testing in prisons, and universal screening. Some proposals have called for mandatory testing of high-risk individuals, but they fail to recognize the implicit impossibility of identifying such groups and requiring them to be tested.[29] How would officials implement legislation that mandated testing for only certain, ill-defined social groups? Because such proposals are impossible to enforce, only universal screening programs could be mandated. But such programs would have obvious problems.

Conservative columnist William F. Buckley, Jr., has recommended mandatory universal screening, with all seropositive individuals being tattooed on their forearms and buttocks. This, he suggests, would serve to stem the epidemic by warning those who might share needles or have sex with such individuals. The sorriness of Buckley's logic, however, is more than apparent. First, he fails to differentiate between those with AIDS and those who are positive for the antibody. Second, he fails to note the possibility of false positives, which, with mandatory testing, would become much more likely. As epidemiologists recognize, the incidence of false positive tests increases when the prevalence of infection in the population being tested is low. "We face a utilitarian imperative,"


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wrote Buckley.[30] But there is no evidence whatsoever that such an invasive and stigmatizing program would slow the spread of this epidemic. Buckley's proposal is all the more remarkable in light of his consistent attacks on intrusive government. A powerfully moralistic homophobia is only thinly veiled by such proposals.

When the epidemic worsens, as it most certainly will, society's desire to identify and segregate infected individuals will probably become more intense, even though massive, compulsory screening would offer little in the interests of public health. The public will cease clamoring for such measures only if the full costs and negligible benefits are clearly explained and understood. Otherwise, the irrational desire to segregate may be overwhelming.

Finally, it is worth questioning the purpose of testing, especially in light of the fact that, at this writing, there is no effective treatment for AIDS. In the 1930s, when states began to mandate premarital blood testing for syphilis, individuals found to be infected could seek treatment, become noninfectious, and go on with their lives; their contacts could be found, tested, and, if infected, treated. Such programs obviously served the interests of the individuals who were infected as well as the public interest. Such a program is not possible in the case of AIDS, for which there is currently no cure and no means of rendering noninfectious those individuals who carry HIV.

Some have argued that testing is advisable because knowing one's antibody status will encourage individuals to act responsibly, to avoid spreading the infection, and perhaps to avoid further risks that could contribute to the development of disease. This may be true for some, but it has yet to be determined; individuals may have quite variable psychological and behavioral responses to learning of their infection status. Many individuals, especially in the gay community, have altered their behavior without knowing their antibody status. The test has risks in that it is difficult, even in the best of circumstances, to guarantee that the results will be held strictly confidential. Fears that a positive test could lead to discrimination seem realistic in light of Justice Department rulings and the highly stigmatized view of the disease.[31]

All this, of course, is not to argue that testing is useless. Many individuals, especially those likely to have come in contact with the virus, may want to learn their antibody status. Obviously, they should be able to do so under the strictest standards of confidentiality. Moreover, as treatments become available, it is likely that they will be most effective if initiated before the development of symptoms. It would thus become


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important for infected individuals to find out on a timely basis—while they are still asymptomatic-so they may seek treatment.

It is crucial to maintain the distinction between voluntary use of the test and mandatory screening. The test could be used as a "marker" to license discrimination in employment, housing, and the availability of health and life insurance. Mandatory screening could therefore have the effect of creating an underground epidemic in which infected individuals, fearing discrimination, isolation, or quarantine, refuse to cooperate with public health officials. Hidden infection is the nemesis of any effective campaign to halt an epidemic disease.

Among those asserting their right to require individuals to take the ELISA test are insurance companies, which argue that individuals who have been exposed to HIV are likely to have higher health-care costs than the population in general; therefore, they contend, such individuals should pay higher premiums. "If America's private voluntary-insurance system is to remain workable, AIDS tests must be allowed so the disease can be underwritten in the same manner as heart disease, cancer, or alcohol and drug abuse," explained Claire Wolkoff of the American Academy of Actuaries. "The alternative is to spread the risk factor over the whole population, thus raising the price of insurance for everyone."[32] Several states have taken legislative action to bar insurers from requiring the test, or to assure its absolute confidentiality. When the District of Columbia passed such a resolution, Senator Jesse Helms, the conservative Republican from North Carolina, said "the truth is the so-called homosexual rights crowd has snookered the entire District of Columbia into footing the bill to provide special treatment for those who are at health risk because of AIDS." At least four life and health insurance companies announced a decision to stop doing business in Washington, D.C., rather than comply with the legislation.[33]

The question at the heart of the debate over insurance testing is, who will bear the cost of AIDS? Should the costs of the epidemic be spread over the whole society, or should they be borne by those who have been and will be infected by HIV? Early studies estimated the average healthcare costs for AIDS patients to be about $150,000, although later investigations soon determined that this figure might be overestimated by as much as 100 percent. Total direct and indirect costs of the epidemic—the losses from medical care and income—rose to $3.3 billion by mid-1986. An added problem was that hospitals often had to pick up the tab for AIDS patients. This has been particularly true in New York City, where close to 30 percent of all AIDS victims are intravenous drug


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users, whose health care costs tend to be higher and who are less likely to be insured.[34] In this respect, AIDS again reveals deep and persistent social problems, in this instance, the problem of financing health care. How should the risks of catastrophic disease be spread? Should we apply an individualist ethic, or look to social programs to distribute the costs of disease more equitably? These questions have been on the national agenda for more than a generation. AIDS forces them out of the shadows.

At issue on who should bear the costs of the epidemic is the critical question: Who is responsible? This has been especially significant in the history of sexually transmitted diseases, traditionally viewed as diseases of individual moral failing.

The debate over screening for HIV antibody is ultimately part and parcel of a larger debate in American society over testing in general. New biotechnologies make it possible for tests to reveal a great deal about any individual: his or her health status, behaviors, medical risks, and genetic makeup. This is information that not only insurers but also employers and the state might want to have. The right to require tests, and the question of whose interests such tests are to serve, promise to be bitter and controversial issues in the years ahead. Indeed, they raise the question of whose interest medical science will serve. The issue of compulsory testing reflects the most fundamental tensions between civil liberties and social control.


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AIDS: From Social History to Social Policy
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