After the Media Frenzy, Preventing Another 'Guatemala'
Research
Susan M. Reverby, 10/06/2010

After the Media Frenzy, Preventing Another 'Guatemala'

(Research) Permanent link

I might easily have missed it. I was being a compulsive historian, going to one more archive (having already been to many) to find more material for what would become the book Examining Tuskegee: The Infamous Syphilis Study and its Legacy (2009). I was in the University of Pittsburgh’s archives to read through some of the papers of Thomas Parran, the American Surgeon General (1936 - 1948) famed for his fight against syphilis and his book, Shadow on the Land. I realized that John C. Cutler, one of the key physicians in the study in Tuskegee who continued to defend it into the 1990s on the Nova film “Deadly Deception,” also taught at the University of Pittsburgh. He left papers there as well.

I opened the boxes. There was almost nothing about Tuskegee, just a published article I already knew quite well, and nothing about the many studies and work he had done over a long distinguished career. There were just one study’s findings he left behind. I noticed the title on the unpublished research report: “Experimental Studies on Human Inoculation with Syphilis, Gonorrhea and Chancroid.” I read on and my jaw kept dropping.

The experiments being described all took place in Guatemala between 1946 and 1948. They were funded by a grant from NIH to the Venereal Disease Research Laboratory of U.S. Public Health Service (PHS) with the cooperation of the Pan American Health Organization and the Ministry of Health, the National Army, the National Mental Health Hospital and the Ministry of Justice in Guatemala. The purpose was benignly described as determining methods of prophylaxis against syphilis, understanding the effects of penicillin in treatment, questioning serologic tests, and enhancing knowledge of the biology and immunology of syphilis in man. What happened was anything but benign.

Cutler, with the assistance of Juan M. Funes, the leading Guatemalan venereal disease (as it was then called) specialist in their Ministry of Health, proposed a study involving prostitutes, because prostitution was legal in Guatemala and because prostitutes were allowed to visit men in penal institutions. “It was thought,” Cutler wrote, “that the prostitutes serving the penitentiary could furnish a means of securing the desired information.” What this meant was sending in a woman infected with syphilis or gonorrhea, allowing sex to occur, and then providing the “volunteers” with prophylaxis to see if it prevented infection.

When this did not provide enough of a pool of infection, Cutler and Funes moved on to repeating studies that had primarily been done with rabbits and chimpanzees. They created inoculums; they began abrading arms, faces, and penises. They began infecting subjects: not in the penitentiary, but in the country’s only mental hospital. They did blood draws (no infecting) at an orphanage to test various serology protocols and deal with the problem of false positives. They did provide treatment, but I could not really tell if everyone was cured. I could not believe what I was reading.

Even more amazing was that they knew this was on an ethical edge. Deception was seen as necessary. Cutler, writing to famed penicillin researcher and Public Health Service physician R. C. Arnold in 1947, admitted that they were not really telling very many people that the inoculums contained the syphilis bacteria. “As you can imagine,” Cutler reported to his colleague, “we are holding our breaths, and we are explaining to the patients and others concerned with but a few key exceptions, that the treatment is a new one utilizing serum followed by penicillin. This double talk keeps me hopping at times.” In a second letter, he repeated his concerns that “a few words to the wrong person here, or even at home, might wreck it or parts of it.” Cutler was not worried about his subjects; he was concerned with how his Guatemalan sponsors would see it and others at home.

Arnold was worried. Eight months after the Nuremberg trials of Nazi doctors had ended, he confided to Cutler, “I am a bit, in fact more than a bit, leery of the experiment with the insane people. They can not give consent, do not know what is going on, and if some goody organization got wind of the work, they would raise a lot of smoke. I think the soldiers would be best or the prisoners for they can give consent. Maybe I’m too conservative. . . . Also, how many knew what was going on. I realize that a pt [patient] or a dozen could be infected, develop the disease and be cured before anything could be suspected. . . In the report, I see no reason to say where the work was done and the type of volunteer.”

The studies finally did not amount to enough to warrant publishing. As penicillin was proving so successful, the Public Health Service had little money for this kind of work. Cutler was told to pack up, leave supplies for the Guatemalans, and come back to be assigned elsewhere.

I brought my notes home and thought about putting this information in the Tuskegee book. I did not want the two studies confused, however. Guatemala was an inoculation study where men and women were given a disease. Tuskegee was a study where the men already had the disease (despite the many myths I have spent nearly two decades trying to counter). In Guatemala they proffered treatment (even if maybe not to everyone). In Tuskegee they tried to keep everyone from treatment (even if they did not succeed). I decided to leave the Guatemala story out of the book. It would be too confusing and too complicated to explain.

I did not forget it, however. I went back to Pittsburgh in June of 2009 to look at the materials again and take even more careful notes. I finally wrote a paper based on it in March 2010 and gave it in May at the annual meeting of the American Association for the History of Medicine at the Mayo Clinic in Rochester, Minnesota. I was on the last session of the last day. There were 20 people in the audience. The discussion was lively, but not overwhelming. After the semester ended, I wrote the paper up and sent it to the Journal of Policy History because it was planning a special issue on human subjects. It will be out this coming January 2011. (For a prepublication copy, see my Web site.)

What might have been buried in an historical journal, however, took another step. To make sure I had the medicine right, and because we had briefly discussed it, I sent a copy off to Dr. David Sencer, the former director of the Centers for Disease Control and Prevention whom I had interviewed about his role in the responses to the study in Tuskegee. Duly disturbed by what I had written, Sencer asked if he could send it to current CDC officials before it came out. I agreed.

This is when my discovery took on another life. CDC officials were concerned enough to ask me for more notes and then to send their leading syphilis expert to Pittsburgh. His report confirmed my findings and by examining the medical records more carefully determined that not enough penicillin was given to everyone. After that my paper and the story went up the chain of command. It took some convincing along the way to explain to officials outside the CDC how important this was. By early September, this realization had clearly permeated various sectors of the government as far as Department of Health and Human Services and even the White House.

By October 1, I agreed to post my pre-copyedited article, and the official apologies by Secretaries Hillary Clinton and Kathleen Sebelius were arranged, the Guatemalan government was alerted, NIH and the State Department held a joint press conference, and President Obama called President Colom in Guatemala. The administration has asked for an Institute of Medicine report and the Presidential Commission for the Study of Bioethical Issues is set to examine how we protect individuals now, especially in studies done by Americans outside our borders.

The press coverage and reaction has been overwhelming, crossing the world in just more than a nanosecond. As I have been called upon by now countless media outlets to discuss this all, it has been difficult to do what historians do best: explain details and context.

Most reporters want the most salacious details that fit a trope from a bad science fiction film or our worst nightmares of what medicine can do. I am asked to “rate” which one is worse:  the study in Tuskegee or this one in Guatemala. I am being besieged with people who have their own fears and stories, a couple of nasty e-mails, and one person who hopes that my family and I die. Some seem amazed that I did not just blog about this the minute I found it. Somehow careful thought and consideration, not to mention how to influence policy, is not part of this mix.

This experience is, in the end, a chance for all of us to consider the role that these kinds of exposures play in our work. Once the initial shock is over, what do we want the Guatemala revelation to do? The debate on the necessity for protections in the developing world continues and perhaps this will be a reminder of why they matter. I have tried to emphasize that Cutler was not just some aberrant monster. He thought the war on syphilis required these kinds of sacrifices. He thought he was doing good science.

I invite your thoughts on what we do with all this now.

Susan M. Reverby is the Marion Butler McLean Professor in the History of Ideas and Professor of Women’s and Gender Studies at Wellesley College. Her latest book is Examining Tuskegee: The Infamous Syphilis Study and its Legacy. Her last article in the Hastings Center Report was “More than Fact and Fiction: Cultural Memory and the Tuskegee Syphilis Study,” in 2001.

Posted by Jacob Moses at 10/06/2010 05:08:50 PM | 


Comments
From the New York Daily News:

In an attempt to test how well a one-stop assistance program is working, the Department of Homeless Services split 400 struggling families into haves and have-nots.

The "haves" get rental assistance, job training and other services through a program called Homebase.

The other half wasn't so lucky.

Those people - chosen at random - were dubbed the "control group" and shut out of Homebase for two years. Instead, they were handed a list of 11 agencies and told to hunt for help on their own.
Posted by: aebrain@webone.com.au ( Email | Visit ) at 10/7/2010 7:02 AM


Susan, thank you for emphasizing the point that Cutler saw himself as doing good science and was helped by many colleagues along the way, people who also believed this was good and reasonable science. This to me has always been the true horror of the Tuskegee syphilis study (and the lesson I try to get my students to learn, via your work). The road to hell in medical science is often paved by well-intentioned researchers working in systems that cannot actually allow them to imagine their own people doing harm. It is time to put better systems of protection in place for people subject to research, e.g., it is time to insist on a new system of IRBs which do not involve conflicts of interest that cause IRB members to consider their institutions' needs. - Alice Dreger
Posted by: a-dreger@northwestern.edu ( Email ) at 10/8/2010 12:05 PM


There are some fundamental issues as I see them. While unethical research from the past may leave paper trails, today's unethical research is probably logged into computer systems and more difficult to get at. Next, the concern I have is with decentralized or nonclinical studies. Unethical studies done on a number of residents at institutions leaves co-witnesses. Unethical research done in non clinical or non institutional settings does not. This is the most dangerous form of research.

When you ask what should be done, perhaps you can investigate the fact that attempts to pass laws strengthening prohibition of nonconsensual experimentation are being tabled year after year. This is a start.

This is not my life's project, but I've had to take some interest in it because I myself am a victim of involuntary experimentation that is brutal, cruel and unethical. I don't know that it's government sanctioned across the board, but certainly it is being allowed to happen since I have some evidence and all it got me was a case number (I'm being stonewalled.)

It's hard to know when the experiment started, but I would guess that it was in the late 1960s, indicating that there might be a paper trail. The more recent events include stress, anxiety, trauma, recreation of previous trauma and a push toward something similar to simple partial seizures. Not only did the experimentation begin during my childhood and before I was a US citizen, but I have a child who has also been victimized in an attempt to created heightened stress for me.

Until people in the US get their heads together and look into why stronger national laws are not being passed (or if the Common Rule is being waived if that is the case) I have to pick up what's left of my life and find a better country to live in. I'll be dead by the time the useless "profuse apologies" come through.
Posted by: ravelrylu@gmail.com ( Email ) at 12/26/2010 1:37 PM


Mrs. Reverby, Until few months ago, I was not fully aware of the ramifications that research using human subjects entails. With so many pharmaceutical companies looking for global market expansion, your hard and diligent work raises awareness about scientific progress in an ethical and professional matter. Your contribution to increase the knowledge of student like me is very much appreciated.
Posted by: ortiz.a@husky.neu.edu ( Email ) at 3/25/2012 9:38 PM


I will bookmark this for future reference and refer it to my friends. I guess I am not the only one having all the enjoyment here! keep up the good work
Posted by: chenghuiaa123456@163.com ( Email | Visit ) at 5/15/2013 1:40 PM


Really impressed! Everything is very, very clear, open is a description of the problem. It contains the information.
Posted by: makexiao0327@gmail.com ( Email | Visit ) at 7/4/2013 2:25 AM


Fashion are you occasionally also want to change the fixed hairstyle? In fact as long as you choose a long wig, so straight hair or curly hair as you change, hurry up to learn to learn!
Posted by: orologireplica2013@gmail.com ( Email | Visit ) at 8/1/2013 3:35 AM


The next time I read a blog, I hope that it doesnt disappoint me as much as this one. I mean, I know it was my choice to read, but I actually thought youd have something interesting to say. All I hear is a bunch of whining about something that you could fix if you werent too busy looking for attention.
Posted by: magyblog@gmail.com ( Email | Visit ) at 8/16/2013 2:30 PM


A very informative site. The way you have share this information is
really very appreciative. Hope to see more on this topic here. Thanks
for posting this information here.
Posted by: nitinkhare246@gmail.com ( Email | Visit ) at 8/19/2013 2:00 AM


President Obama called President Colom in Guatemala
Posted by: mar1us91@yahoo.com ( Email | Visit ) at 9/25/2013 9:05 AM


The usa was created by, fundamentally immigrants. For decades, millions of men and women have arrived in america seeking an improved life. Starting inside the late 19th century, the immigration coverage of the usa began to improve.
Posted by: johnlaw827@yahoo.com ( Email | Visit ) at 3/3/2014 6:44 AM


Actual security is most critical part regarding security. Unless you have physical usage of network, you cannot use that. If you cannot plug cable there is no need network. That is situation inside wired phrase.
Posted by: johnlaw827@yahoo.com ( Email | Visit ) at 3/3/2014 6:44 AM


I came around simply to create positive I hadn’t lost something and that i bump into a very worthy post.
Posted by: steve7876@gmail.com ( Email | Visit ) at 3/28/2014 12:36 PM


I enjoy alot reading your post so, i have made these comment here hope you will like it.
Posted by: jocnouro@yahoo.ro ( Email | Visit ) at 4/11/2014 7:43 AM


Do you have a translation?
Posted by: spain1001@web.de ( Email | Visit ) at 5/21/2014 9:15 AM


The amount of information I found in your article exceeded my expectations, you need informations about so I have only one thing to say: great job! Many, many thanks!
Posted by: bmwowner@gmail.com ( Email | Visit ) at 6/1/2014 11:24 AM


Evidence based practice is needed in order to prevent Syphilis, Gonorrhea and Chancroid.I found many valuable raw materials from your article. I expect more from you in your next post.
Posted by: smalltabletopfireplace@gmail.com ( Email | Visit ) at 6/2/2014 5:13 AM


There was virtually nada about Tuskegee, vindicatory a publicised article I already knew quite recovered, and aught nigh the many studies and impact he had through over a longitudinal eminent job. There were vindicatory one study's findings he liberal behindhand
Posted by: smkn4bengkulu@gmail.com ( Email | Visit ) at 6/2/2014 11:35 PM


The studies eventually did not amount to enough to warrant publishing. As penicillin was proving so victorious, the Open7 Wellbeing Force had immature money for this sort of business. Cutler was told to mob up, leaving supplies for the Guatemalans, and develop corroborate to be allotted elsewhere.
Posted by: smkn4bengkulu@gmail.com ( Email | Visit ) at 6/3/2014 12:18 AM


Thanks for the strategies presented. One thing I additionally believe is credit cards presenting a 0% apr often appeal to consumers in zero rate, instant acceptance and easy on the web balance transfers, however beware of the number one factor that is going to void your own 0% easy road annual percentage rate and as well as throw you out into the poor house rapid.
Posted by: smkn4bengkulu@gmail.com ( Email | Visit ) at 6/3/2014 11:59 AM


Thank you for sharing the nice post with useful information.
Posted by: rodneysingle716@hotmail.com ( Email | Visit ) at 6/13/2014 3:14 AM


One of the most important services offered in present medicine are the at home health care services. As an increasing number of people are seeking professional help in their day to day care, there is an increased demand for mobility support, especially for the elderly.
Posted by: hyderali.urgetech@gmail.com ( Email | Visit ) at 7/22/2014 2:00 AM


The natural formulation of Arg Matrix makes it completely immune to the internal systems of our body. So consuming it is totally tension free and devoid of any type of side effects.
Posted by: hyderali.urgetech@gmail.com ( Email | Visit ) at 7/22/2014 2:00 AM


These health hazards put the work environment and the employee at the risk of losing capacity of working.
Posted by: hyderali.urgetech@gmail.com ( Email | Visit ) at 7/22/2014 2:01 AM


If you are facing problem with any kind of health related issue, then you are suggested to use Herbal Health Care Products that are 100% organic and don't comprise any side effects.
Posted by: hyderali.urgetech@gmail.com ( Email | Visit ) at 7/22/2014 2:01 AM


Search and click, search and click, it's an online world now, it's all about a click and all what you desire to see appears in front of the computer screen in just blink of an eye.
Posted by: hyderali.urgetech@gmail.com ( Email | Visit ) at 7/22/2014 2:02 AM


thank you my friends
http://actiongames99.blogspot.com/
Posted by: unitedjoko663@gmail.com ( Email | Visit ) at 10/18/2014 2:40 PM


اهلا بكم في موقع العاب الفلاش وخاصة النوع الجميل والمشهور في النت الا وهو العاب سيارات وضعنا لكم مجموعة العاب متميزة اتمنى ان تعجبكم
Posted by: unitedjoko663@gmail.com ( Email | Visit ) at 10/19/2014 4:06 PM


It's getting into order now. Peace has been maintained. Thanks to our troops over there.
Posted by: jeremycort88@gmail.com ( Email | Visit ) at 11/17/2014 6:27 AM


Persons appreciate shopping for amazing, appealing, fascinating and from time to time attractive scents for them selves and pertaining to others. This can be executed conveniently along with inexpensively in an on-line parfum shop.
Posted by: jolijin43@gmail.com ( Email | Visit ) at 12/1/2014 6:50 AM


Deciding on a Finest Special birthday Surprise is obviously Difficult. inch Getting a beneficial marriage ceremony treat might make your beneficiary think specific, particularly if your item has to be thing personalized, distinctive, as well as careful. While picking out a issue,
Posted by: jolijin43@gmail.com ( Email | Visit ) at 12/1/2014 7:06 AM


Pondering it’s firm, Seiko may very well be making designer watches including superlative style and also unequalled good quality. Their unique expertise may very well be obviously observed in this large selection including things that that that they creation, which include fob designer watches, deafening scares, wristwatches, or perhaps sporting situations designer designer watches.
Posted by: jolijin43@gmail.com ( Email | Visit ) at 12/1/2014 7:06 AM


I know about your expert writing level! This post is ensuring assist as a phenomenal observation for the readers
Posted by: sherlindecosta@gmail.com ( Email | Visit ) at 12/13/2014 2:58 AM


I know about your expert writing level! This post is ensuring assist as a phenomenal observation for the readers
Posted by: sherlindecosta@gmail.com ( Email | Visit ) at 12/13/2014 2:58 AM