On Friday, Secretary of State Hillary Rodham Clinton and Health and Human Services Secretary Kathleen Sebelius apologized for a diabolical human experiment conducted in Central America 64 years ago and engineered by the U.S. government. From 1946 to 1948, scientists deliberately infected Guatemalan research subjects with syphilis to study how well penicillin worked.
It should. This experiment is eerily similar to the notorious 40-year Tuskegee Study that used African-American men as human lab rats. Beginning in the 1930s in Macon County, Ala., the U.S. government left more than 400 syphilis-infected black men untreated to study the course of the disease. The men, who suffered from the often debilitating, sometimes deadly late-stage form of the sexually transmitted disease, thought they were getting free medical care for "bad blood." They were never told that they were actually subjects being followed in a long-term, "no treatment" study that finally ended in 1972. The men, poor and uneducated, were also given free meals and promised money for burials if they allowed their bodies to be autopsied after they died.
The other Clinton, former President Bill, officially apologized for the Tuskegee Study in 1997. Surrounded by survivors and their family members, he called the experiment "deeply, profoundly, morally wrong, something Americans prefer not to remember but dare not forget." Miss Evers' Boys, a 1997 Emmy Award-winning HBO film starring Alfre Woodard and Laurence Fishburne, brought to life what ethicists and experts continue to refer to as the darkest hour in medical history.
Though many believe that the men in the Tuskegee Study were secretly and intentionally infected with syphilis, they weren't. They already had it. But in the Guatemalan experiment, U.S. government officials did intentionally give subjects the disease. What's even creepier, the stuff of conspiracy theories, is that the same physician was linked to both the Tuskegee and Guatemala experiments. Dr. John C. Cutler, who rose as high as assistant surgeon general in the U.S. Public Health Service (PHS), conducted the study in Guatemala, according to his own records. He was also a key researcher in Tuskegee.
Susan M. Reverby, a Wellesley College professor, unearthed the experiment in Guatemala while working on a follow-up to her 2009 book, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy. "Public Health Service researchers did, in fact, deliberately infect poor and vulnerable men and women with syphilis in order to study the disease," Reverby writes in an article that will be published in the January issue of the wonky Journal of Policy History. "The mistake of the myth is to set that story in Alabama, when it took place further south, in Guatemala." The article is now available on Reverby's Wellesley faculty page.
In an unusual move in her world, where academics keep their research hush-hush before publication, Reverby alerted the federal government to the case in Guatemala before her work was to appear, which led to yesterday's apology.
According to Reverby, PHS doctors used incarcerated men as subjects and exposed them to syphilis or gonorrhea by allowing prostitutes infected with the disease to visit and sleep with them. That government researchers were pimping research subjects — literally — seems bad enough. But Reverby also explains that, in an act of cruelty worthy of Josef Mengele, hundreds more subjects — this time mental patients — were infected with STDs, either through injections or by having the bacteria poured into wounds.
Unlike in the Tuskegee Study, most of the subjects in Guatemala received treatment. But according to HHS, at least one patient died; it remains unclear whether the prostitutes were treated.
In their joint-apology statement, Clinton and Sebelius said they deeply regretted what had happened and promised to appoint a committee of independent scientists to conduct a fact-finding investigation and issue a report. Their apology and actions were proactive, appropriate and especially timely right now. As flu season approaches, for the first time the Centers for Disease Control and Prevention is recommending the flu shot for everyone over 6 years old. And this year's injection protects against three flu strains, including H1N1, or swine flu, which caused so much mayhem last year.
Numerous studies have shown that African Americans remain much less likely to get immunizations of any kind. For older African Americans, who more often than their peers of other races have heart disease, diabetes and other serious illnesses, a flu shot can mean the difference between life and death. African Americans of all ages avoid shots — and the health care system in general — out of mistrust. Last year, during the height of the H1N1 hysteria, a widely circulated Twitter message warned, "Don't take the swine flu vaccine. Remember the Tuskegee Experiment."
By and large, though, it's not a hazy memory of the Tuskegee episode that's fueling suspicion and distrust of the system. Most of us are too young to remember it; even Dr. Cutler is long gone. Rather, our broken and battered current health care system is what is driving African Americans away from treatment and care. It's been a decade since Congress first admitted officially what 37 million black people already know: that the U.S. medical care system doesn't treat us well. A damning 2002 report by the well-respected Institute of Medicine called "Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care" laid it out point by ugly point for Congress and everyone else. And according to numerous studies, little has changed.
HHS Secretary Sebelius would be wise to use the Guatemala revelation — and the shadow of Tuskegee — as an opportunity to get back to fixing America's health care system.
In a statement also released yesterday, black Congresswomen Barbara Lee (D-Calif.) and Donna Christensen (D-Virgin Islands) said it best: "Even today, the memories of Tuskegee Syphilis Study are reinforced by the discrimination many people of color continue to experience, fueling mistrust of the health care system among those who need it most."
Linda Villarosa directs the journalism program at City College in New York and is a regular contributor to The Root.