Late last year, US President Barack Obama made an extraordinary announcement. He formally apologised to the Guatemalan government for American medical experiments which had deliberately infected hundreds of people with syphilis to test the effectiveness of penicillin. Even though the experiments were conducted more than 60 years ago, there are families still suffering the consequences. And as David O'Shea reports, apologies and government inquiries don't come close to addressing their pain.
REPORTER: David O’Shea
MARTA ORELLANA (Translation): Yes, just so they could do experiments. As if we were animals.
No-one gave their consent, and they were certainly not informed that they were being infected with syphilis and gonorrhoea.
REPORTER (Translation): Who told you, you had to be injected? The Americans?
FEDERICO RAMOS MESAS (Translation): Yes, the Americans were the ones who injected me.
PROFESSOR SUSAN REVERBY, WELLESLEY COLLEGE: So then you have to ask, did they go back into the community? Did they spread this disease? Did we really give the people of Guatemala syphilis?
This is Tuskegee, Alabama, where the Guatemalan experiments were hatched. The site of America’s most infamous medical experiment which began in the '30s and ran until the '70s, with the unambiguous title, 'Untreated syphilis in the male negro'.
Here, doctors found African-Americans already infected with syphilis and then left them untreated so that they could monitor their progress. They never told the men that they had the disease. It became a national disgrace.
PROFESSOR SUSAN REVERBY: I am looking for the Pollard family gravesite because a number of the Pollard family were in the Tuskegee study.
Historian Susan Reverby has spent over 20 years studying Tuskegee and knew some of the men.
PROFESSOR SUSAN REVERBY: Now Mr Pollard definitely died of syphilis and was in the study. This is his wife. We don’t know what happened to the wives.
One of the doctors, John Cutler, still defended the Tuskegee study more than 20 years after it was exposed in the press and stopped, saying…...
DR JOHN CUTLER, VOICE OVER: ‘These individuals were contributing towards the health of the black community rather than simply serving as guinea pigs for the study.’
Even then, Cutler didn’t want his guinea pigs to be finally treated for the syphilis they had carried for decades.
DR JOHN CUTLER, VOICE OVER: ‘It would be undesirable to go ahead and use large amounts of penicillin to treat the disease because it would interfere with the study.
It was while researching Cutler’s role in Tuskegee that Susan Reverby made the remarkable discovery last year that he was head of another, much more invasive experiment, started in 1946, in Guatemala.
PROFESSOR SUSAN REVERBY: I was just completely shocked. I had spent nearly 20 years explaining to everyone that no-one had been given syphilis in Tuskegee. And here was this study with the title 'Inoculation of syphilis', written by this man who had been involved in Tuskegee in the '60s, and then again in the '90s, is in a sense justifying the study. I was completely... I mean, nobody knew about this.
TERRY COLLINGSWORTH, HUMAN RIGHTS LAWYER: I see him as an evil man because of the undeniable circumstances that when he was told to discontinue the experiments in the US, because they were illegal and ethically wrong, he decided to look for a place where he could literally get away with it.
Terry Collingsworth is a Washington-based human rights lawyer representing the Guatemalans who have emerged to file a class action law suit against the US Government.
TERRY COLLINGSWORTH: The fact that they went to Guatemala is partly at least due to the fact that everyone understood that Guatemala was a place where there were no rights for poor people, or people in prison. You could pretty much do what you wanted with them. So to take advantage of that kind of situation certainly multiplies the crime.
Collingsworth has a local lawyer handling the case in Guatemala.
LAWYER (Translation): Here are all the people, and here is your name, Marta Cesarea Pérez Ruiz. Your children’s names are also included. They’re all included in the lawsuit.
Some claim to be direct victims. Others – like Marta Cesarea’s children - are descendents of victims. One was born without a brain and her severely disabled daughter was born with syphilis. Syphilis is a disease which - if it is not treated early enough - can lead to serious physical and mental illness and can even kill.
MARTA CESAREA PEREZ RUIZ (Translation): They detected syphilis in her. The doctor said that the disease he’d detected in me was syphilis too, in both of us. So they treated us with a double dose of penicillin, because the doctor said the disease was very advanced.
I am about three hours from the Guatemalan capital on the way to meet some former soldiers who were directly infected in the experiments. Now well into their 80s, they are some of the only known survivors.
GUIDE (Translation): We’re arriving at my house. Federico Mesa lives there.
They are lucky to have lived this long. Many of the other victims died years ago. Federico Ramos Mesas was forcibly conscripted into the army in 1946 and soon became an unwitting participant in the study. He says he was subjected to a series of tests and treatments but was never told what it was for.
FEDERICO RAMOS MESAS (Translation): I couldn’t say no. I had to keep quiet.
REPORTER (Translation): Why couldn’t you refuse?
FEDERICO RAMOS MESAS (Translation): They injected me. And after that, I ended up with this.
REPORTER (Translation): Did you pass on the disease to your wife after you got married?
FEDERICO RAMOS MESAS (Translation): More or less.
Not far from here is another affected family whose father was also forced into the army at the same time. They say syphilis killed him.
MAN (Translation): They injected him every fortnight to a month. But they never told him why. After he left the army, he began to feel the effects once he was here. Then he got together with my mum, and that same disease caused his death and infected my mum.
Their mother died with an open sore on her hip.
MAN (Translation): She really suffered enormously.
VICTORIA (Translation): It just kept growing and growing, right down to the leg. The skin was coming off.
Victoria has been clinically blind since she was very young and believes it was the result of her father’s illness.
VICTORIA (Translation): I told my father I couldn’t see very well. He took me to a medical centre and they told him to take me to another place. But we had no money. So I stayed like this.
MAN (Translation): Other ex-soldiers were affected, but we don’t know who they are because they’re already dead.
REPORTER (Translation): Their families could be elsewhere.
MAN (Translation): Yes, but we don’t know who they are.
REPORTER (Translation): The disease may have been passed on to their grandchildren?
MAN (Translation): Yes, because this is like a chain that keeps infecting people.
Almost everything we know about the Guatemala study is from these notes and letters in US archives.
ARCHIVES: ‘On Friday the 9th we performed another experiment, inoculating six patients with pus and treating three of them.’
Doctor Cutler’s own correspondence – this one to his boss at the Public Health Service in New York- reveals he was well aware they were overstepping boundaries.
ARCHIVES: ‘I hope that it would be possible to keep the work strictly in your hands without necessity for outside advisors or workers other than those who fit into your program and who can be trusted not to talk. Sincerely, John C. Cutler.’
Deep into the Guatemalan country side, I am going to see another former soldier infected by syphilitic prostitutes planted in the barracks by the doctors.
GUIDE (Translation): We’re almost there. It’s just over the river.
MANUEL GUDIEL (Translation): I’m Manuel Gudiel.
REPORTER (Translation): It's a pleasure to meet you.
MANUEL GUDIEL (Translation): Rest with me in the shade.
They now say that the gringos brought the disease to Guatemala. That’s how the disease spread. In those days, women were cheap, only a quarter. You only paid 25 cents, 50 cents or one quetzal. Why wouldn’t you be up for it? You never stopped to think about the disease they were carrying.
He remembers being treated by American doctors at the military hospital.
MANUEL GUDIEL (Translation): They vaccinated me every eight days and then sent me back to the barracks. When I got back there, I couldn’t walk properly, but I was pretty steady on my feet. So I left and started to...
Sadly, Gudiel will never know how the legal case ends. He died not long after this interview.
MANUEL GUDIEL (Translation): I’m not going back to see the girls. Not any more.
REPORTER (Translation): OK. Bye.
TERRY COLLINGSWORTH: I think everyone who was infected, under whatever circumstance, is a victim of a serious crime, an invasive crime. Your body is your temple, so to speak, and to have someone, without telling you, expose you to a disease that would damage you is a serious crime. And they did it with children. To me, that takes you to another level of wrong.
Behind these walls in Guatemala City is the orphanage. The complex covers an entire city block. It was somewhere inside there 64 years ago that a then 10-year-old Marta Orellana says her nightmare began.
MARTA ORELLANA (Translation): They laid me on a bed, with a doctor on each side and the nurse holding my head. And then they tried to force my legs open. I resisted with all the strength of a 10-year-old girl. I wouldn’t let them. I did all I could to stop them. But they kept saying I had to.
She says the director, Dr Cofinyo, hit her in the face to get her cooperation.
MARTA ORELLANA (Translation): Then they got gauze, or cotton wool. I’m not sure. And they opened my legs and then they examined my private parts. And they put in their fingers and inserted cotton wool. They did this over and over, and then they placed it all in a box beside the bed. And I cried because I was a child and it hurt.
After this she became so sick she says she was bedridden for weeks. The next time she was called in it was in a group of 10 girls.
MARTA ORELLANA (Translation): They called me again and that’s when they doubled me over head to toe and then took the liquid from my spine. When they took out the needle, like any child I was curious, so I turned my head and looked, and I saw the liquid they’d taken from my spine. It was yellow.
TERRY COLLINGSWORTH: To intentionally infect children with a disease so you can test drugs on them really sinks to the lowest of lows in the seven levels of hell.
It is still unclear whether the experiments ended when Dr Cutler left in 1948. Questions remain about this former mental asylum and whether testing continued here. One man, who is also listed as a plaintiff, is convinced that years after Dr Cutler left his brother was experimented on here. One day he escaped and made it home, complaining doctors were constantly injecting him. Even though he didn’t smoke, his pockets were full of cigarettes.
MAN (Translation): My mum would ask, “Why is Víctor bringing so many cigarettes?” She’d find lots of them in his uniform. So I believe they did give them cigarettes back then.
REPORTER (Translation): So they’d...?
MAN (Translation): Yes. So the doctors could do whatever they wanted to them.
It is recorded in Cutler’s notes that participants were given cigarettes for their participation. Another suspicious footnote is that years after the experiments are supposed to have ended Marta Orellana says she was followed by one of the doctors involved in the experiments she endured as a 10-year-old child. She feared he wanted to continue his experiments on her.
MARTA ORELLANA (Translation): Once we were at La Aurora Zoo and one of my classmates said, “Look, there’s that doctor who did those things.” “Where?” I said. And she pointed to a black car.
REPORTER (Translation): Why?
MARTA ORELLANA (Translation): She said he’d asked after me. “What for?” I asked. She said, “Who knows? Go with the teacher.” So I went up to the teacher and started walking beside her because I’m sure he wanted to kidnap me.
After what she has learned studying two of the world’s worst known examples of medical malpractice, Susan Reverby says anything is possible.
PROFESSOR SUSAN REVERBY: I think, not exactly the same, because most studies still have to go through institutional review boards, but clearly some kind of study that we will be equally shocked about is obviously going on right this minute somewhere else in the developing world for sure.
YALDA HAKIM: David O'Shea filming and reporting there. And David tells us that the official Guatemalan inquiry into the outrage is due this month. Meanwhile, lawyers will meet US authorities in August. They're hoping for a speedy compensation agreement. For more background on the story, go to our website. There are also links to the work of John Cutler and Susan Reverby. That's at sbs.com.au/dateline.
Reporter/Camera
DAVID O’SHEA
Producer
ASHLEY SMITH
Editors
DAVID POTTS
ROWAN TUCKER-EVANS
Researcher
MELANIE MORRISON
Translations/Subtitling
PILAR BALLESTEROS
Stills courtesy of the US National Archives
Original Music composed by VICKI HANSEN
19th June 2011