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Tuskegee 1
Tuskegee 1

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October 2000 Email this to a friend
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Tuskegee II?
Secret HIV testing rankles some

In its notorious Tuskegee experiment, US health authorities from 1932 to 1972 let hundreds of black men with syphilis suffer and die without treatment just to see syphilis's cruel effects run rampant. Did the ghost of Tuskegee return to haunt New York City? So charged AIDS activist Michael Petrelis, project director of AIDS-Statistics.com on September 5, lambasting a nine-year study by the New York City Department of Heath that secretly tested gay men for HIV and-- adding perhaps injury to insult-- failed to inform those found infected. Did Petrelis catch Tuskegee's ghost in the act?

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From 1990 to 1998, New York tested blood for HIV of thousand of men who came to two city clinics-- one in Manhattan's Chelsea, another in Fort Greene, Brooklyn-- to be tested for syphilis and other sexually transmitted diseases (STDs). The researchers used leftover blood, normally discarded, and recorded demographic data-- age, ethnicity, reported sexual orientation-- but supposedly nothing that would link a blood sample to anyone in particular. And New York wasn't alone-- similar studies, under the auspices of the US Centers for Disease Control, looked without asking at the blood of pregant women, prisoners, TB patients, and other groups.

People seeking treatment for STDs can be a rich vein of information about AIDS; indeed, they can represent the "yeast" of an AIDS epidemic: they are sexually active in ways at least somewhat risky, at the same time that having an STD can make it easier to get or give HIV. After nine years of compiling data, New York's City's Department of Health created a kind of motion picture of HIV prevalence in a signal population-- a picture of a loaf not rising but, happily, falling on average by more than half.

The Department of Health reported its findings in July at this year's international AIDS conference in Durban, South Africa: the rate of HIV infection among "men who have sex with men" showing up at these two STD clinics declined overall from 47 percent in 1990 to 19 percent in 1998. Of those who tested positive for HIV, some 59 percent were aware of their status, but 41 percent were not. For that latter group, the Health Department was in the curious position of doing extended treatment, contact tracing, and partner notification for such conditions as syphilis and gonorrhea, while ignoring the men's secretly discovered HIV.

In a press conference outside the office the study's author, Dr. Lucia Torian, Petrelis demanded that New York City try to track down the unknowing HIV-positive men and inform them of their status.

But the city Department of Health has refused, saying that doing so would be unethical. Moreover, the city says, it simply can't be done because there is no way trace back the HIV-positive blood to its donor precisely because ethics rules were followed that were devised in the aftermath of Tuskegee-- rules that allow subjecting patients' tissue to tests to which they don't give consent, so long as no link exists between results and their identities.

Comparisons to Tuskegee are unfounded, the city maintains. No one was bribed or lied to about their health. The study served as a "dip stick" reading of HIV prevalence in important populations, not a hands-off experimental meditation on how people die. At every turn, visitors to city clinics are encouraged to get HIV testing, which is offered anonymously and free. And there are good reasons for not forcing people to take HIV tests or giving people the results of unrequested ones-- they may not be ready to hear the results.

Prevalence surveys like this can help figure out which groups to target for education and treatment. Interesting nuggets came out here: the overall decline revealed local lumpiness. Over the nine-year period, the decline in HIV among clinic-goers was greater among whites (34-10%) than Hispanics (47% to 13%) and blacks (56-32%). Among men having no STD, HIV infection plummeted from 48 percent to 10% in 1998. But in older black men-having-sex-with-men, the rate of HIV infection increased.

So are secret, albeit identity-protected, epidemiological surveys the place to find shades of Tuskegee today? Consider another New York City institution-- Cornell Medical College-- sponsor of a long-running study conducted in Port au Prince, Haiti, that looks at how couples where one partner has HIV sometimes infects the other. If researchers can find some people with a natural resistance to HIV, it could help find an HIV vaccine. Enrollees get condoms and counseling, but infections occur anyway, at a rate of about seven percent a year in couples having unprotected sex-- a rate that would be far lower if those infected with HIV received antiretrovirals, which dramatically reduce virus loads in body fluids. While Cornell's enrollees get some of the best free health care on offer in Haiti, expensive retrovirals are not part of the deal, just like it is in almost every other impoverished country. And if a vaccine is ever developed, Western liability laws mean that it will be tested first on the poor and dark-skinned.

Unfair? Yet righteous indignation at any particular project has to be tempered by awareness of the systemic choice by the rich world to impoverish poor nations' health-care systems in the guise of "structural adjustment"-- not to mention a tendency of third-world elites to prefer guns to butter. "The ethical issues sometimes are torturing me,'' Dr. Jean William Pape, the Hatian doctor who runs Cornell's study, told the New York Times last year. The ghost of Tuskegee may not haunt the corridors of New York City's Department of Health, but it still haunts medicine.


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