You’ve probably already heard: last Friday President Obama called President Alvaro Colom of Guatemala to apologize for a public health outrage committed 64 years ago. In 1946, American doctors, with the support of the Public Health Service, conducted experiments on prisoners, the insane, soldiers, and prostitutes, who were initially used to infect the prisoners. Though the institutions and governments involved gave consent, none of the subjects did. In all, 696 people were purposefully infected.
The study lasted two years and produced very few and very meaningless findings, which were dismissed or forgotten until last year, when Susan Reverby uncovered them in her research for her book, Examining Tuskegee: The Infamous Syphilis Study and its Legacy. Speaking about the moment she opened the box containing these papers, she said, “So I started to read it, and I said, ‘Oh my god.'” She first went public with this information at a presentation last May. It is now the subject of an article entitled, “‘Normal Exposure’ and Inoculation Syphilis: A PHS ‘Tuskegee’ Doctor in Guatemala, 1946-1948.”
You can read Professor Reverby’s full article at her faculty page at Wellesley.
Today, I’ll bring together some of the emerging facts on this. To start:
Though Dr. John Cutler was deeply involved both in Tuskegee and in the Guatemalan case, the studies do not seem to be otherwise linked.
In Tuskegee, the subjects were not infected, but were also not treated, though treatment was available. In Guatemala, the subjects were infected. They were also treated. The focus of this study was how penicillin worked, and whether it was effective after exposure, but before diagnosis of the disease.
Cutler and his colleagues infected subjects through sex with prostitutes as well as by introducing the infection into cuts on their faces, arms, and genitalia.
In addition to President Obama, Robert Gibbs, Hillary Clinton, and Kathleen Sebelius have all issued apologies on behalf of the United States.
The headlines from last Friday until today include these, with links:
The NewsHour interview with Susan Reverby Watch the video from last night’s newscast.
Now that we are beginning to know what happened, it seems we need to begin to think about how to think about it. To that end, I’ll leave you with some quotes by Professor Reverby on the subject of Tuskegee, human experimentation, and how we, now, come to understand such things.
In that spirit, I–along with Professor Reverby–invite you to think about how you are responding to this new revelation. From her book Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study:
“Sometimes thinking about the study, as with work on slavery or the Holocaust or the atomic bombing of Japan, does become overwhelming. It is possible to become very angry, or to imagine that this could not have happened, or to easily just shake our heads and click our tongues over what “they” did. When President Clinton offered the federal government’s apology in 1997 to the survivors, the news coverage similarly emphasized the emotionality of the event. It was almost as if only in an emotional context could the pain of racial injustice and scientific arrogance become real or discussed. The horror and perfidiousness of the study could seemingly only be communicated to a television audience in the familiar daytime format of confession and repentance. But such reliance on emotion, while critical and cathartic, will only be a temporary fix if it does not become the basis for real commitment to a rethinking of research procedures, racial, injustices, [and] ethical precepts.”
Reverby allows that we will all feel many emotions upon hearing about such horrific events, but that then, we all must work to more fully understand what has happened. It’s only when we can begin to do this, she says, is justice actually possible. She writes:
“Media coverage, a television documentary, or a movie might focus national attention. . . . This is still mostly just rumor, fact-dropping, and political usage of the Study, whether in a fiery sermon or a quick bioethics lecture. There are physicians who believe that medicine has been maligned in the tellings and in the taking out of historical context. There are family members of the men who still feel no real closure and who use the Study’s power to provide a narrative around which to organize ills of subsequent generations. There is widespread anger that the criminal courts never meted out punishment to those still alive who established and perpetuated it. That kind of judicial assessment is impossible to provide now, if it ever was possible.
Knowing what happened and why it matters in medicine and American life might get us a little closer to a goal of justice. It is a task worth taking up.”
In the case of the newly uncovered series of events in Guatemala, it’s a task we’re just taking up. It will take a good while even to begin to understand what happened and why. We’ll post more on the subject, as it evolves.