“I can’t let Cutler become a barbarian..."

I arrive at Susan Reverby’s home, in a leafy neighborhood in Cambridge, Massachusetts, on a cold November morning. My hands feel numb as I reach out to ring the doorbell.  In the photo on the Wellesley College website, Reverby stands in front of a neatly arranged bookcase. Standing with her arms folded and wearing thin rim glasses - not serious-looking but not quite smiling – she looks like a scholarly version of Meryl Streep.

But today she’s sporting a baggy, green sweatshirt and tousled bed hair. “Come on in!” she says cheerfully as she leads me to the kitchen. As I clutch my cup of coffee, hoping that my fingers will gradually thaw out, we talk about what it’s like to be a professor in a single-sex university before we launch into the interview. She makes me laugh when she says that elite education is useless and that what college you went to is merely “a good pick-up line in a bar” and that students spend too much time stressing over deadlines and that she “really doesn’t care” if someone hands in an assignment a few days after the deadline. She appears bubbly and relaxed, a natural extrovert.

Reverby grew up in a medical family. Her father was a doctor and her sister Eve became a leading epidemiologist and an expert on HIV/AIDS. It is thus hardly surprising that Reverby became fascinated by medicine, the history of it, that is, rather the science itself. And that history, as Reverby would come to realize, has a closet full of skeletons.

One of them is Tuskegee: an experiment that has become a symbol of racism and unethical behavior in medical research. Conducted by the US Public Health Service between 1932 and 1972, the study examined the natural progression of untreated syphilis in 600 rural African American men who were never told that they had the disease or were ever treated for it.

Whilst writing her book on Tuskegee, Reverby began to search for information on Thomas Parran, a Public Health Service officer who oversaw the early part of the study. In the National Archives, in Pittsburgh, she stumbled across dozens of boxes detailing the history of another experiment in which mental patients, soldiers, sex workers and prisoners were infected with syphilis, gonorrhea and chancroid without their informed consent and many of them were never treated. The experiment was launched in Guatemala in 1946, the same year that Reverby was born, and was led by John Cutler, a physician who worked on the Tuskegee study during the 1950s.

Although she was unaware of this at the time, Reverby had unearthed evidence that while the Nazis were being tried at Nuremberg for war crimes that included performing experiments on prisoners, the US government was using its taxpayers’ money to infect people with deadly diseases in a developing country. And in that same country, six years later, the US government would support a coup against a democratically elected government that would usher in 36 years of civil war and authoritarian rule. At least 83 people died as a result of an experiment that ultimately failed.

The discovery of the Guatemalan experiments would also cast a shadow over the legacy of president Juan José Arévalo, whose administration is regarded as part of a democratic period of free speech, open political activity and land reform, known as the “Ten Years of Spring”. As the “Cutler files” would show, the experiment was carried out with the cooperation of Guatemalan health officials.

In October 2010, news of the experiment hit the headlines, the US issued an unprecedented public apology to then president Alvaro Colom and Reverby, a professor at Wellesley College, was unwittingly thrust into the limelight. In this interview, she reflects on her role as a historian and argues that John Cutler was neither a sociopath nor a “mad scientist”. His actions were normative and his belief that the victims of his experiments could be sacrificed as part of “a war against disease” was shared by his superiors, who authorized and funded his research.

Two years after the story of Cutler’s experiment went viral, pharmaceutical giant GlaxoSmithKline and two scientists were fined US$240,000 in Argentina for falsifying parental authorization during vaccine trials on 15,000 babies from low-income families in Argentina. This more recent case reminds us that no matter whether the subjects of an experiment are mental patients in a developing country, babies or African American sharecroppers, there’s always an asymmetrical power relationship between the scientist and the subject used as a human guinea pig.

Events such as these are worth bearing in mind when Reverby argues that if we demonize Cutler we fail to learn from the past and we fail to address a disturbing question: To what extent do the practices that now appear so abhorrent to us still prevail, to this day?

What was your reaction when you discovered that the US government had conducted experiments with Guatemalan citizens without their prior consent?

I didn’t realize the magnitude (of what I had found) quite immediately. I went to the Pittsburgh archives to look at the Thomas Parran papers and the archivist said: “The (John) Cutler papers are here, too”. So I opened them hoping to find out more about Tuskegee and his position on it. He had

Alzheimer’s (disease) and wasn’t available to talk. He died the year after I went (to the archives). It looked horrific because I’d spent fifteen years explaining to people that nobody had been given syphilis in Tuskegee and here’s Cutler giving people the disease so I completely flipped out. But I really thought they had treated people because that’s what he claimed the study was about: trying to find the prophylactic use of penicillin. Until you go through all of the data you can’t know exactly what happened. I took a look at these thousands of pieces of paper with thousands of names on them and I thought: “Wow, I don’t know what to do with this”. I held onto them, I kept my notes and I was going to put it in the book but when I came back to my notes a year or two later it just seemed too complicated and it didn’t seem usable. In 2009 I went back to Pittsburgh – the book was done and was coming out that fall – I started to look at it again and I thought: “this will make a great paper” so I proposed it for a conference for the spring of 2010.

At what point did the former director of the Center for Disease Control and Prevention (CDC), David Sencer, get involved?

I had become friends with David Sencer, who had been the director of the CDC when Tuskegee went public and had been fired in the late 70s (he served as director between 1966 and 1977). He’s now passed away (in 2011). He liked to communicate with people and we started sending stuff to each other back and forth and he took me to the CDC to talk about Tuskegee. At one point when we were driving to the CDC from my hotel he said: “I don’t understand why people think we could have infected anybody in Tuskegee. Why would we infect anybody?” And I said: “Well Dave, there’s Guatemala”. And he looked at me and said: “What do you know about Guatemala?” And I said: “What do you know about Guatemala”. He said: “I was at medical school when it happened. I knew Cutler and I heard the rumors but I didn’t know anything about it”. And I said: “Well, I found the papers and I’m going to write it up. Will you read it for me?” I needed someone who knew enough about that time period to make sure I didn’t make any mistakes because when you’re writing about the history of medicine, if you make one error the people who don’t agree with you pick on that one fact and say that you don’t know what you’re talking about. Dave didn’t usually call, we usually communicated by email, but this time he called and said: “This isn’t a scientific problem, this is a political problem for the CDC”. And I said: “Oh Dave, I’m going to publish this in the Journal of Policy History, which is this obscure history journal that nobody reads. Even I don’t read it”. And he said: “No, in the age of the Internet everybody reads everything. It will get picked up and the CDC will look really foolish”. So he said: “Do you mind if I share this with people at the CDC?”.

[frasepzp1]

What steps did the CDC take to corroborate your findings?

Dave gave my unpublished paper to Harold Jaffe, the CDC’s associate director for science, and then it went to the director. People at CDC asked me to send the material, so I Xeroxed everything and I cleaned up my notes and sent them. They said: “We need to look at this ourselves” so they sent epidemiologist John Douglas to Pittsburgh and he took all the data back to the CDC. They went through all the records and established that people hadn’t been treated. So by the end of August my unpublished paper and Douglas’ report went up the chain of command.

Did the CDC share the findings with the federal governmentYes, the draft of my paper went from the director at CDC to the National Institute of Health (NIH) and from there it went to the Domestic Policy Council in the White House, where the decision was made that they needed to apologize before my paper was out. We agreed that I would post the paper on the college’s website so it wouldn’t look like they were hiding it, on October 1^st at 9am. What the government hadn’t told me, which I’m still pretty annoyed about, was that they had given the story to NBC’s science reporter Robert Bazell but they had embargoed it until 9am. So my paper goes up at 9am and at 9:02 I get a call from a friend who says: “Oh my God, Susan, this is amazing”. And I said: “I just put it up two minutes ago and you know about it?” And she said: “It’s all over MSNBC”. I had put my cellphone number on the paper as my contact and five minutes later the entire world’s media was calling me. It was just bananas.

It took many years for the government to apologize for Tuskegee. Were you surprised that they apologized for the Guatemalan experiment, which was far worse?

Yes, I never expected the apology. My daughter was the senior foreign policy staffer for Steney Hoyer, the minority whip in the House of Representatives. She called me the night before and said: “They’re briefing all of the health staffers and this is going to be really big”. The CDC had a crisis management person who was helping to coordinate everything. I think they wanted to get ahead of it so that they could say that as soon as they knew about it they took action, which made sense for them.

What does an apology mean?

It means that something wrong happened, that’s all it means. It doesn’t predict future behavior. The US doesn’t usually apologize to other governments so it was a big deal but given our history with Guatemala there are many things to apologize for and the question becomes: What would give justice to the people of Guatemala? Would giving a couple of millions of dollars to the Guatemalan families be justice? What would I want if it were my family member? In Tuskegee, there was a lawsuit, the US government settled it and the men got money, not much. But what the community wanted was an apology, an admission by the US government in a really big and public way that this was wrong.

Talking about compensation, the legal battle on behalf of the victims and their families has fallen apart after health researchers withdrew their appeal in June 2013 and the US District Court ruled that the US was protected under immunity laws. Were you disappointed by this outcome? Do you still feel there’s any hope of securing compensation for the victims?

The question is: how do we find the individual people who were harmed? At least in Tuskegee we had people’s names and even then it was hard to find all the heirs of the people who died. In Guatemala, one of the people who were infected in the mental institution didn’t even have a name; they referred to her in the records as “the mute of San Marcos”. How are you going to Google “the mute of San Marcos” from 1948? How is someone going to remember that that was his or her grandmother’s name? How are you going to find them in Guatemala? A couple of people have come forward and said they were infected but how do you know that they didn’t get syphilis from somewhere else? We can’t check their names against the records, so how do we know? I got called about a year ago by a law firm that was trying to figure out how to find people and they asked me: “Do you have a list of the names?” And I said: “No, there were thousands and I didn’t make a list of them, the US government has that”. Even if I had them, I wouldn’t have used them. I’m a historian and there are all these rules so in my paper I blanked out anything that was identifying.

But you did see the names on the records you found…

Yes, there were medical records and people’s names were there but I don’t know if that’s all been blanked out now.

In hindsight, do you wish you had held on to those papers?

Well, I did, there were boxes and boxes of material. I’m a historian in a small college and I didn’t even have enough money to copy all of it. I wouldn’t have used the names for the work I was doing and at the time I was doing the research I had no way of imagining that the US government was going to apologize for this.

So what happened with all those boxes?

They’re in the US National Archives. Anyone can get to them but they’ve probably blanked the names out.

(The documents are available on the National Archives website but have been redacted and the names of the patients have been blanked out).

You’ve raised the question of how we define justice. In the end, was justice done?

There has been some justice. I think apologies matter. The problem is that it feels like something that happened far, far away, too long ago, and one evil man.

Going back to the media frenzy you described when the story broke, did you receive any negative reactions from the scientific community?

One of my friends called me up and said: “For God’s sake Susan, we’ve spent 20 years explaining to people that nobody was infected in Tuskegee and now we’ve got to start all over again having to explain this?” And I said: “I’m really sorry but it’s what happened and I can’t pretend this didn’t occur”.

Did the CDC attempt to stop you from publishing the paper?

There was no way they could stop me. They had no control over me, I wasn’t getting money from the government, there’s a First Amendment and I’m on the American Civil Liberties Union (ACLU) state board. Also, my book was already out and people knew I was a respectable historian with a good track record and that I wasn’t a crazy person who was out to make things up. If they had tried to stop me it would have become an even greater story. No one was trying to do that; they were just trying to figure out how to handle it. And this happened a long time ago. If I would have uncovered that this was going on right now in Afghanistan or some other hotspot it might have been a different story but it was Guatemala, it was 60 years earlier, it was easy for people to distance themselves and say this was a different time and moment.

And many of the people involved were dead…

Everybody was gone. Cutler was gone and Mrs (Eliese) Cutler was in her 90s. Dave Sencer forewarned her the day before (the story) broke, which I think was fair. She didn’t talk to anyone from the media who went to find her. Why should she? I felt terrible for her because I thought: “oh my God, your husband died four or five years ago, you’ve spent your life building a career with him and I’ve now destroyed this”.

(Eliese Cutler died on November 8^th, 2012).

But Eliese Cutler was actively involved in the experiment and helped Cutler by taking photographs of the patients’ private parts….

She was complicit in what went on but my struggle with all of this is to explain to people this is not an evil man, this is someone caught up in the politics of science and of the public health service. My job is to help people understand how they could be Cutler, what the pressures were and why the thinking within the NIH made this seem like a reasonable if slightly risky thing to do and why much research feels like this even now.

When Cutler died in 2003, many obituaries described him as a “pioneer” in the fight against sexually transmitted diseases and practically no references were made to the controversy over the Tuskegee experiment.  Were you surprised that someone whose actions have been likened to the Nazi crimes was treated so benevolently?

The thing about Tuskegee is that he plays a pretty minor role in it. His name is only on two of the papers and it’s only the seventeenth name in a long list. Where he comes to fame and why we all disliked him is because in 1992, on the 20^th anniversary of the end of the Tuskegee study, two films were made, Bad Blood, made by a British company, and The Deadly Deception, made by Nova, in the US. He was interviewed in both of them. It was 20 years later and it would have been so easy to say: “It was a different moment, we thought about race differently, I’m so sorry”. But he didn’t do that and his words were really chilling. He said: “We were in a war against syphilis and in a war soldiers die. We had the right to do this”. And it didn’t help that he looked like Liam Neeson in Schindler’s List. He had white hair, these piercing blue eyes, he was a tall guy and he looked like a Nazi. I just looked at him and thought: “Why don’t you apologize, you idiot?” (She laughs) What I was angry about was that even 20 years later he couldn’t see that he had done something terrible.

Cutler couldn’t have carried out these experiments without the institutional support of the US government and the Panamerican Health Organization. To what extent were his views shared by the medical community at large during the 1940s?

It (the Guatemalan experiment) had been approved by the syphilis section of the NIH so the secretary general knew about it and it kept going up the chain. Cutler wasn’t like Doctor Moreau (a character created by science fiction writer H.G. Wells who created human-like beings from animals. The novel deals with themes such as pain, cruelty and human interference with nature). He wasn’t a mad scientist who was off on his own. He was part and parcel of this government effort. It was 1946, after the (Second World) War, when the prophylaxis they had been using was a cream that men had to put on their penises and it burnt so nobody wanted to use it. Two years earlier, penicillin had proven to be a cure for early syphilis but it was still really hard to get and they were recovering it from patients’ urine. So Cutler was trying to figure out whether this new drug was going to be a prophylactic (a medicine used to prevent disease) and whether people who had been exposed to it but hadn’t been infected could take it. The problem with sexually transmitted diseases (STDs), especially syphilis, is that the spirochete (spiral shaped bacteria, some of which are serious pathogens and cause a number of diseases such as syphilis) can’t be reproduced because it dies in the air so you need a vector to deliver it. Sex workers had been used a couple of times, people knew that you were not supposed to do it but Cutler thought he was on the cutting edge of really important research.

How did Cutler come into contact with Juan Funes, the director of the Guatemalan venereal disease control department?

Cutler was working at the STD lab run by the Panamerican Health Organization (PAHO), which was then called the Panamerican Sanitary Bureau, in Staten Island, where Juan Funes was being trained and that’s how they became friends. I think Cutler and Funes must have gone out for a beer and Cutler said: “We just did this study with prisoners in Terre Haute but we didn’t get enough to see”. So I’m sure Funes said: “You know, not only is prostitution legal in Guatemala City but sex workers can come into the prison” and that’s how they ended up in Guatemala. If Funes would have been from Honduras or Costa Rica they would have ended up there. I don’t have any evidence for this, but how else could this have happened?

(The Guatemala experiments were designed based on experiments carried out in 1943-44 using consenting prisoners at a penitentiary in Terre Haute, Indiana. Intended to test preventative strategies for gonorrhea, the Terre Haute study ultimately failed to meet its goals because of difficulties with establishing the infection in subjects).

But there’s a crucial difference between Terre Haute and Guatemala: consent. Cutler never sought consent from the Guatemalan patients…

Under the circumstance of: “If you agree to this study you’ll be let out of your cell for more time or we’ll give you more cigarettes or money to spend in the canteen”, are you really giving consent? What kind of permission can a prisoner give? That’s why prisoner research has been a big debate in the US.

In your report on the Guatemalan experiment, there’s no evidence that Cutler ever felt any remorse for inoculating people with a deadly disease for the sake of an experiment that ultimately failed. Did he de-humanize the Guatemalan people who were used for these experiments? Do you think he regarded them as lab rats rather than human beings because they were not American?

No, it’s not so much animals as soldiers. Cutler was the youngest of four siblings and his two older brothers got killed during the Second World War. His family had made the ultimate sacrifice. So he saw them (the patients) as soldiers in a war in which he was the general and as such he had the right to send them to their deaths in order to win the battle.

Do you think Cutler would have carried out experiments without informed consent with American citizens?

Probably, except that they had this great pool of people that they could use, it was a convenient sample.

[frasepzp2]

Were you shocked by the fact the Guatemalan authorities were willing to allow a foreign power to use their citizens in this way?

No, it happens all the time now in the developing world. Cutler and Funes didn’t tell the director of the mental hospital what they were doing; they misled him even though people higher up clearly knew what was going on. And (in exchange for having access to the patients) Funes traded plates and forks, a movie projector - because there was no entertainment for the patients - and Dilantin, a drug for epilepsy because a lot of the people in the hospital were not actually mentally ill, they were epileptic and the hospital didn’t have enough medicine. When you think about how under-resourced these places are the offer of any help is really a bargain. It’s the same thing now in the developing world when a drug company comes in and says: “We’ll set up a clinic here and we’ll give you x and y”. That was what was most shocking to me.

You say that Cutler regarded himself as a general fighting a war. Would you describe him as arrogant?

Oh yes, and I think he was careerist. I think he did care about STD issues but I also think that he wanted to build his career and to be “Mr Big STD”. He was born into a working class life - his father was a carpenter - and he married into money.

The obituaries would suggest that he succeeded and that when he died he was regarded as “Mr Big STD”…

Yes, absolutely. When the story broke, a man, very high up in the Egyptian ministry of health said: “Oh my God, not our Dr Cutler”. He was very well regarded and I thought that was very interesting. Sometimes we have the sense that the people who are going to do these things are sociopaths, that they’re monsters, that they’re oddballs. My job is to make people understand that this was a normally ambitious researcher who thought he was doing the right thing, not an evil guy. It’s the banality of evil as Hannah Arendt argues in Eichmann in Jerusalem and that’s what’s so frightening and what people don’t want to deal with.

(Hannah Arendt (1906-1975) was a German born political scientist. She coined the expression “the banality of evil” to argue that Nazi lieutenant colonel Adolf Eichmann, one of the major organizers of the Holocaust and was sentenced to death after the war, was neither a fanatic or a sociopath, he was a very average person).

Has the family expressed resentment towards you for shattering Cutler’s “Mr Big STD legacy”?

Yes, there’s a lot of anger in the Cutler family because he was demonized but not  (Thomas) Parran, the surgeon general who agreed to it. The University of Pittsburgh stopped giving “Cutler lectures” but the main public health building is still named Parran Hall.

Has Cutler been demonized?

Yes. You always need a body, you need a Hitler.

Does turning Cutler into a scapegoat allow us to forget that he couldn’t have done this without institutional support and that there’s an issue of collective responsibility here?

Absolutely. There are issues here that are harder to address than one bad guy such as the way we do science and the structural violence and inequalities that would make Guatemala say yes to this.

Was John Cutler an American version of Josef Mengele, the SS officer who carried out experiments on prisoners during the Holocaust?

When James Jones did his first book on Tuskegee, Bad Blood, he talked to one of the doctors involved and asked him: “Why didn’t Nuremberg give you pause?” and this physician looked at him like he was out of his mind and said: “But they were Nazis”. With Tuskegee and Guatemala I’m worried that people will say: “those were imperialists, those were racists, that was a long time ago, that’s not one of us”. Prensa Libre published a cartoon showing Uncle Sam looking into the mirror and seeing (Josef) Mengele staring back. When we say History will be the judge what it actually means is some historian is the judge. My job is to make people look in the mirror, like that cartoon, so that they can see that that is us. It’s important to make him (Cutler) normative so that people can look at him and make parallels with what they do now. I can’t let Cutler become a barbarian because if Cutler becomes a barbarian then we don’t learn anything.

As a historian, did you feel the responsibility of judging Cutler weighed on your shoulders?

Yes. That’s why I wrote the other paper because I was afraid that the way I had written the story meant that people wouldn’t see the larger picture and that I owed a sort of understanding of him as a more complex human being so that people could identify more with him.

How could the Guatemalan experiment remain a secret for so many years? Was there a deliberate attempt to hide and bury it?

In 1954, he (Cutler) took part in a similar study in Sing Sing Correctional Facility in New York, but they did get informed consent. His name is on the paper and the document has a long section on the history of infection studies but Guatemala is never mentioned either because that experiment failed and there was no good data or because they were trying to hide it. I don’t know which. Cutler kept all the papers. Were there papers floating around in the division? Maybe, but if there were they were either thrown out or deep six (to bury something or someone six feet deep, the standard depth of a grave). Were there people who knew about it by rumor like Dave Sencer did? Sure. Do I think more people knew about it but didn’t talk about it? Every organization has something in its closet that nobody wants to talk about.

If Cutler kept the papers, how did they end up in a public archive? Why didn’t he destroy the evidence?

I can only imagine many scenarios for which I have no evidence. Why did Cutler give the papers? Did they move? Did his wife say: “John, get these papers out of the basement?” Maybe when he was retiring he didn’t want this stuff in his house anymore or he was pissed that it never got written up. Maybe he wanted somebody to find it…

After the Guatemala experiment came to an end, Cutler worked in India and Afghanistan. Is there any evidence that he carried out similar experiments in those countries?

No, what he did there was to set up surveillance and treatment programs through the World Health Organization (WHO).

Investigative journalist HP Albarelli uncovered evidence of a mind control experiment conducted by the CIA and the US army in the French village of Pont Saint Esprit in 1951. During that experiment, the CIA peppered food with LSD. This occurred in 1951, three years after the Guatemalan experiment. Does this show that the Guatemalan experiment was not an isolated incident? Do you think there are many similar experiments that we know little or nothing about?

I’m sure there are. This one’s got everything: US tax payer dollars paying sex workers and giving people a dreadful disease, it’s prisons, it’s mental patients, and it’s the US going to Guatemala where we overthrew the government six years later, so it has imperialism. It’s like a trifecta of horror. What’s sad about this is that it happened during this little window of progressive governance in Guatemala.

Liberian scientist Cyril Broderick has accused the US Department of Defense of funding Ebola trials on humans just weeks before the outbreak in Guinea and Sierra Leone. He quotes the Guatemalan syphilis experiment as evidence that this is not a wild conspiracy theory. Is it plausible that something similar to the Guatemalan experiment could happen today?

Did some of this stuff happen in the past? Yes. Do I think the US is capable of doing that in other countries even now? Sure. Do I think it happened in the ebola case? No. I think life is stranger than conspiracy theories allow.

Four years after your paper came out and the world learnt about the Guatemalan experiment, what impact do you think it has had?

I think it’s too soon to see whether it will have any impact on the way people understand bioethics. With Tuskegee, because it happened in the US, there’s the African American community to carry the story forward. But who’s going to carry out this story forward in the collective memory? We have a very small Guatemalan community here and it has lots of other issues. That’s the question: will knowledge about it go forward or will it become another tick in a list of awful things in which the US has become involved?

*Louisa Reynolds is the International Women’s Media Foundation’s 2014-2015 Elizabeth Neuffer Fellow.