Beginning in 1932, the U.S. Public Health Service conducted a 40-year medical study of African-American men in Tuskegee, Alabama. The government studied men who’d contracted syphilis years earlier. The researchers falsely told them they were receiving treatment for their disease, when in fact they were actually given placebos. A similar study was conducted in the 1940’s in Guatemala.
Dr. Susan Reverby uncovered the facts of the Guatemala case. Reverby is the chair of Women and Gender Studies at Wellesley College in Massachusetts. She’ll speak Thursday at Michigan State University about her work. She told WKAR’s Anna Schroen how the American government justified lying to the volunteers.
DR. SUSAN REVERBY: Well, in Tuskegee there was a debate going on about whether the illness that syphilis could cause were actually caused sometimes by the treatment. So the assumption was that if we didn’t treat people we would see what would happen. The real issue with Tuskegee is not only were they not treated, they were lied to, that is they weren’t told that the asprins, tonics and even the diagnostic spinal taps were treatment. So the men stayed in this study and even after penicillin proved incredibly useful for at least early stage syphilis and by the 1950s certainly for people in late latency of the disease, they still didn’t treat them. The study only ended because there was this huge outcry once the newspapers got a hold of the story, but it was not hidden, there were thirteen articles written in major medical journals. People knew about the story, they just didn’t know that the men weren’t “volunteers”.
ANNA SCHROEN: Did you think that there was any racial aspect to the case?
REVERBY: Well, the Tuskegee study was clearly done only on African Americans because the concern and belief at the time was that the disease was actually different in blacks and whites and there was an interest in whether or not treatment was really necessary. The Guatemala study, I think the reason they went to Guatemala is not so much racial as because prostitution was legal in Guatemala but also it was legal to bring sex workers into the prison to service prisoners. And so one of the questions with a sexually transmitted disease is: how do you transmit it if you want to do a study? And so sex workers who are already diseased are actually a really good transmission form, and that’s the reason they went to Guatemala, as far as I can figure out from the data.
SCHROEN: What caused the Guatemalan study to be shut down, then?
REVERBY: Well, the Guatemalan study only went from 1946 to1948 because its purpose was to look for whether or not both penicillin and a drug that could be useful as a prophylaxis for syphilis, that is, after you’ve had unprotected sex, but before you show the infection. By 1948 it’s pretty clear that penicillin will work to cure the disease and why would you need a prophylaxis if one shot will cure it?
SCHROEN Governments don’t make apologies for incidents lightly; it had to be quite validating to yourself and your research that it happened because of your research.
REVERBY Well, the Tuskegee study, there had been a lawsuit there had been some money, the people were being treated and so were there families, but there was never a formal apology. There was real anger in the black community in particular that none of these physicians were ever brought up on any kinds of charges, the ones who were still alive in the 1970s. So that’s why we organized this huge community, it was a big project to get President Clinton to apologize in 1997. I think what happened with the Guatemala apology is that I shared my research with a man named David Sencer who was the formal director of the CDC, who had been the director during the end of the Tuskegee study and I think he recognized that this was really important and needed to get ahead of it before the story broke in the newspapers if someone picked up my research.
SCHROEN: Do you think that this could happen again?
REVERBY: I just think it’s really important to think about the balance between going forward with research and creating a healthcare system that feels trustworthy to people, particularly in minorities, who feel often that they can’t trust medicine. And I think we all lose when that happens, both science as it goes forward but also people who can’t get access to some of the best healthcare.