Restorative Justice and Restorative History for the Sexually Transmitted Disease Inoculation Experiments in Guatemala

Immoral public health research studies from the past require us to consider who remembers what facts and lessons, and what is done with this knowledge, if there is to be justice for the victims and deterrence of future participant harms. Mention the word “Tuskegee” to anyone in public health and there is a glimmer of memory. Vulnerable populations, institutional racism, government malfeasance, lack of informed consent, and the failure to treat syphilis in hundreds of African American men with the disease are recalled, even if the details falter over when, or exactly what, happened. The study in Tuskegee went on for 40 years (1932–1972), had at least 13 articles in the literature, and was exposed in 1972. The public outcry led to a successful lawsuit, a Congressional hearing, a federal report, and the National Research Act of 1974, as well as plays, poems, music, documentaries and movies, and eventually a presidential apology in 1997. It has had nearly half a century to become embedded in our collective consciousness and political language through its importance in the building of modern bioethics and institutional review board training, and the use of the word Tuskegee as a shorthand symbol for medical or public health racism.¹

Say “Guatemala” and fewer images are recollected. Details are even more vague over the failure of medical and public health ethics, and human rights violations, as Rodriguez and Garcia argued in their 2013 AJPH article.² The study in Guatemala went on formally for two years (1946–1948), with some continuation into the 1950s; involved the inoculation of thousands of sex workers, prisoners, mental patients, and soldiers with syphilis, gonorrhea, and chancroid; was deliberately kept out of research publications; and was exposed in 2010. It has yet to have the same impact as the study in Tuskegee, despite worldwide immediate media coverage, federal apologies, government commission reports in the United States and Guatemala, and one failed and two pending lawsuits. Nearly six years after its public revelation, it is time to ask anew: who has the responsibility to explain this history, and what actions need to be supported?

The Syphilis Study Section of the National Institutes of Health approved the study in Guatemala, and funds came from the Public Health Service (PHS), the Guatemalan government, and what was then called the Pan-American Sanitary Commission, now known as the Pan American Health Organization. Led by the PHS’s John C. Cutler (who would go on to work on the study in Tuskegee in the 1950s and defend it in documentaries in 1992), the purpose was to research whether the newly available penicillin might be useful as a prophylaxis, and not just a cure, for various sexually transmitted diseases (STDs). Seeing himself as a general in the war against syphilis, Cutler believed he, like others in the PHS, were commanding participants who had no right to question their orders. When he and Guatemalan public health official Juan Funes devised the studies, they knew they needed various ways to create exposure: sexual intercourse, inoculations, scarification of genital areas, and drops into eyes and other orifices. The records are uncertain on exactly how many unknowing participants did evince infection, but we know that hundreds were left untreated.³ The PHS correspondence makes clear the doctors knew they were teetering on an ethical line and that secrecy was essential. Even when Cutler coauthored a major review article on inoculation in STD research, the work in Guatemala was left out of the history.⁴

Cutler gave his thousands of pages of reports, photographs, and clinical records, however, to the University of Pittsburgh archives where he taught in the public health school before his death.⁵ The records sat there until I read them as part of my research on the study in Tuskegee. I shared the findings with David Sencer, the former director of the Centers for Disease Control and Prevention (CDC), whom I had interviewed and gotten to know. Sencer alerted the CDC leadership, and within a few short months my article, their own quick study of the records, multiple conference calls, and the CDC’s concerns made it to the White House. It led to the federal apology on October 1, 2010, the notification of the Guatemalan government, a charge to the president’s bioethics commission for a thorough report, and international coverage of the salacious details of what the Guatemalan president labeled “a crime against humanity.” As quickly as the story appeared on the front pages and roused interest around the world as it flew through the Internet, it disappeared and only reappeared when the reports were published or another lawsuit was filed.

If the institutional arrogance and exploitation that made the research possible are not to be repeated in new contexts, then the studies cannot be remembered merely as the “bad old past,” and pressure for reparations should be exerted now. CDC did provide more money to Guatemala for STD care after the story became public, but their case history is short and buried somewhere in another report. The presidential bioethics commission wrote two reports and argued, somewhat tentatively, for a study “to determine if there is need for a national system of compensation or treatment for research-related injuries,” as other bioethics reports and codes have called for repeatedly since the 1970s.⁶

Nothing else to compensate the victims has happened, even though determining exactly who all the victims are is difficult. One lawsuit lost on narrow legal grounds, and another has gone after the universities whose researchers supported the study and the drug company that supplied the penicillin. The latest lawsuit, filed in December 2015, at the Inter-American Commission on Human Rights by the Archdiocese of Guatemala, is against the United States and Guatemala for “human rights violations and crimes against humanity.” As civil rights attorney Robert Garcia has argued, “Apologies are not good enough. Truth and reconciliation require treatment, compensation, and restorative justice.”⁷ The American Public Health Association should stay aware of this lawsuit, add to its support, suggest its members write, talk and teach about this, and keep the pressure up in the public for a monetary settlement to the victims.

Additionally, we need to consider “restorative history.” In 2013, the American Sexually Transmitted Diseases Association held an open discussion and voted to take Thomas Parran’s name off their lifetime achievement award because he was the US Surgeon General (1936–1948) most associated with the campaign against syphilis who supported the studies in Guatemala and Tuskegee. The University of Pittsburgh also closed down its Cutler lectures that were funded by his friends and family. Reputations that are damaged forever in historical memory can be a form of justice, but just labeling these men as “infamous” or “immoral” is too simple.

It is way too easy to tell the history of the Guatemala and Tuskegee studies, as research melodramas filled with bad guys, hapless racialized victims, imperial power, and an ancient past before regulations. We need to understand why those who supported the research thought it was right to do so under the exigencies of the need for knowledge. We must consider why the Guatemalan authorities, as with the leadership at Tuskegee Institute, were willing to let this happen in a resource-poor setting. We have a moral responsibility to honor the victims of the Guatemala studies by making sure public health communities never forget what happened through restorative history as we fight for restorative justice through compensation. We must consider how easy it can be to be caught up in our own research, and fail to see the harms we may be causing that can last for generations in memory and meme, or perhaps worse, are forgotten.