In 1932, the United States Public Health Service (PHS) approved an unethically-conducted syphilis study that involved six hundred poor African-American men at Alabama’s Tuskegee Institute. Many controversial research programs and human trials have been part of the medical field’s history, and scientists with shady ethics have done much harm in the name of science. The government-sponsored Tuskegee Syphilis Experiments, which was able to run for forty very long years, is one of the saddest chapters of that history.
In Macon County, Alabama, there was a very high infection rate of syphilis and very low treatment rates. The Rosenwald Fund, which sought to improve race relations in Macon County, and the United States Public Health Service, joined to address this issue. However, the Great Depression limited the necessary government funding, and the Rosenwald Fund end its support. Nonetheless, the syphilis concern had opened up a pathway for the United States PHS to launch an experiment.1
The United States PHS had initially intended for the study to last for about seven months, and saw no harm since it was designed as an observational study. They would study the effects from untreated syphilis that had already occurred in a population that was already suffering from high rates of untreated and undiagnosed syphilis. The supposed intention was to draw attention to a neglected public health and medical problem in society. However, the men were misled into the study with the promise of free health care, free transportation to and from hospitals, free hot lunches, and free treatment for their “bad blood,” which was the term used for sicknesses such as anemia, fatigue, and syphilis. Of course, being a minority and living in an area with poor medical attention, many men accepted these benefits being offered in return for their participation in the study. The participants accepted without knowing whether they had syphilis or not. Many accepted without knowing what the disease even was. They actually never knew that they had signed up allow researchers to observe the further deterioration of their health rather than prevent it. In an interview, Mr. Pollard, a participant, said “they sit me down in the chair and the nurse and the doctor got behind and give me the shot…. I stayed in bed ten days or two weeks and the nurse came out there and give me some pills.” Mr. Pollard also mentioned the fact that there was no clinic or hospital in his community. He and other participants would meet under a tree and go into Siloh School. He had continued to participate only because they had told him that he had “bad blood” and that they were supposedly giving him medicine for it, and so he trusted the researchers.2
The U.S. PHS decided to extend the study for five to ten years, to watch the effects of untreated syphilis over time, which they referred to as a “study in nature.” Continuing to mislead the patients, they led those patients to believe that they were continuing to receive medical treatment. However, researchers merely wanted to see the long-term effects of untreated syphilis. The men had to go through several uncomfortable tests and spinal taps, which were very painful and of no benefit to them. The researchers were the only ones who knew what was occurring. When penicillin became the accepted treatment for syphilis in 1945, the men were never offered it nor informed about it. The subjects were never given the alternative of quitting the study after the new, highly effective treatment became widely used. The conditions of the study continued right up to the deaths of the patients. Family members of the deceased patients were required to turn over the corpse for an autopsy in order to secure funeral benefits.
The study continued for forty years, until a public health service investigator raised questions and concerns about the experiment. Peter Buxtun wrote to the director of the U.S. division of venereal diseases about the ethics of the experiment, but the agency ignored him.3 He then in turn leaked information about the study to the Associated Press reporter Jean Heller, who exposed the study. In an interview with Heller, she explains how a letter from Buxtun’s supervisor had told him to ignore his findings on the study and that there was nothing wrong. She believed this is what acknowledged that something wrong was going on. Heller’s story appeared on the front page of the New York Times where everyone learned of this highly unethical study. The study was finally brought to halt, and due to the criticism, the Tuskegee Syphilis Ad Hoc Advisory Panel was formed.4 The panel, composed of nine members, five of them black, concentrated on two issues. First, was the study justified in 1932, and had the men given their informed consent? Second, should penicillin have been provided when it became available in the early 1950s?5 The panel made their claims and pointed out what was unethical; however, the facts they presented were not necessarily true. They claimed how wrong it was to not give treatment to the men, however, the researchers pointed at how their intentions were to only observe the progression of syphilis. Therefore, several doctors involved in the study were easily able to justify the experiment.
After forty years, over five hundred of the original participants had already passed, along with some of their wives and even children, who had also contracted syphilis. The families remained quiet and unheard, keeping in silence the anger and shame as well as possible damage to their health. Albert Julkes Jr., whose father was a subject in the study, said, “You get treated like lepers… People think it’s the scourge of the earth to have it in your family.”6 It was an embarrassment to be one related to someone who was a participant in the study because many people would see them as ignorant and thought they didn’t know better.
On July 23, 1973, a class-action lawsuit was filed in the U.S. District Court for the Middle District of Alabama on behalf of the men in the study. A ten million out-of-court settlement was reached and the U.S. government promised to provide for lifetime medical benefits and burial services to all living participants. Along with that, the Tuskegee Health Benefit Program was established to yield these services. Congress also passed the National Research Act, which was targeted in preventing the exploitation of human subjects by researchers.
As a result of this study, many African Americans developed a fear and mistrust of public health officials, so they would not seek medical attention. To help with the healing, on May 16, 1997, President William J. Clinton gave an apology to the eight remaining survivors of the study done in Tuskegee.
“The United States government did something that was wrong — deeply, profoundly, morally wrong,” Clinton said. “It was an outrage to our commitment to integrity and equality for all our citizens. To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.” – President Clinton 7
https://www.youtube.com/watch?v=g6LY3zNQyFE
Many apologies were made to the men still living and their families; however, this does not erase what had occurred for forty years. This experiment was a turning point in the creation of modern bioethics. Many new laws and policies are now in place to ensure that patients are precisely aware of what will be done or administered to them. For example, a television commercial about cough medicine will now have a long list all the possible side effects that can occur from taking it. This is called informed consent, which has been greatly emphasized since this study occurred. Since there was such an emphasis on having ethical studies, the government also halted another study that occurred around the same time in Guatemala. From 1946 to 1948, men and women were purposely infected with syphilis to determine whether penicillin was effective. The results of this study were never published. If the Tuskegee Syphilis study had never occurred, the continuous injustice and unethical experiments would not have come to a halt. It is now more important than ever to make sure that all studies or experiments are done fairly and for all the right reasons.
- David Smolin, “The Tuskegee Syphilis Experiment, Social Change, and the Future of Bioethics,” Faulkner Law Review 3, (Spring 2012): 230. ↵
- Susan Reverby, Tuskegee’s truths: rethinking the Tuskegee Syphilis Study (Chapel Hill, North Carolina: University of North Carolina Press, 2000), 198. ↵
- Britt Rusert, “‘A study in Nature’: The Tuskegee Experiments and the New South Plantation,” Journal of Medical Humanities 30, (September 2009): 157. ↵
- United States. Tuskegee Syphilis Study Ad Hoc Advisory Panel, Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel (Washington D.C.: U.S. Department of Health, Education, and Welfare, Public Health Service, 1973), 108. ↵
- Ralph Katz, “The legacy of the Tuskegee Syphilis Study: assessing its impact on willingness to participate in biomedical studies,” Journal of health care for the poor and underserved 19, (2008): 1169. ↵
- Carol Yoo, “Families Emerge as Silent Victims of Tuskegee Syphilis Experiment,” The New York Times (May 1997): 2. ↵
- USA: President Clinton Apologizes for Syphilis Experiment (Associated Press 1997), video. ↵
36 comments
Cameron Lopez
Great article, Its awful what happened to those men and how this can be written off as an ethical experiment. The use of Guinea pigs and purposely infecting them with something they don’t know about is beyond reasonable. Killing people in such a slow and painful way, the tests they went through were like slow torture and pain.
Michael Hinojosa
An amazingly well written article about a truly horrific and immoral subject that honestly shocks me with the fact that it was conducted and improved. I don’t believe that this subject can be argued ethically over whether or not it was right or wrong. What happened to those subjects was completely and utterly inhumane and immoral; I pray something like this never happens again.
Hali Garcia
Wow what the participants faced was terrible. I cannot believe that this was approved. It is disturbing how the men were not told that they were being injected with syphilis and not even treated. It is even more disturbing how they were told that they would be given free health care, transportation to the hospital, and hot food when in fact they were not.
Christopher Hohman
Nice article. It is terrible what happened to these men who participated in the study. It is just disgusting that scientist and people in general could make their fellow humans suffer so dearly. They should have been given the option to either leave the study or be provided the proper drug for treatment of the disease. It is so sad that an experiment like this went on for so long because it caused so much suffering.
Natalia Flores
Terrible that this could be written off as an ethical experiment. Using humans as guinea pigs and purposely infecting them with something they don’t know about is beyond reason. It’s like killing people slowly and painfully. The trials and tests they went through was almost like soft torture only they lie and say “it’ll help you”. It’s disgusting that they had to file a lawsuit in order to get some form of relief from the affects of the experiment.
Cristina Cabello
Can this study be ethically debated over right or wrong? I believe that it can go both ways. If things did not happen the way that it did then we would not know the things that we know now. But the people that were hurt during this experiment is terrible. They were never informed that they had syphilis. Then they were never treated. Which is basically man slaughter in my opinion. This is a very interesting topic and I am glad that you wrote about it.
Hanadi Sonouper
There comes a time where science and ethics collide and times when they are desperately far apart. We have discussed this particular topic in my nature course, and to hear about this terrible corruption of health to individuals was truly horrific. This would be an example as to when medicine goes a bit too far, these poor innocent people had Syphilis yet neither the doctors or the government did not impose a stop to their crime, not to mention that during this time, penicillin was available. With the help of this drug many of them could have been cured before it was too late, yet they just watched as their disease progressed and became ultimately fatal.
Hector Garcia
It is unbelievable to read of an experiment that would discourage the patient’s well-being, just for results. What these men, women and children had to endure is unbearable. Being used as guinea pigs isn’t just dehumanizing, but it is also repulsive. I would have to say that this experiment has taught us so much about bioethics and how we are suppose to be equals. It is incredible to see that the PHS let experiment run for at long as it did, and I sure do hope that they learn from their mistakes.
Belia Camarena
I think the article did a really good job at presenting the Tuskegee Syphilis study; everything was clear and concise. It is upsetting that the government and doctors alike would be willing to ignore their morals in the name of science. I also thought it was interesting that informed consent resulted as a consequence of the Tuskegee Syphilis study being revealed. I did not know that emphasis on this began only recently.
Ernie Sano
Aw, man. It’s pretty awful hearing about such unethical practices occurring less than a hundred years ago. I think you did a pretty good job on covering the subject and its following consequences. The story of the Tuskegee syphilis experiments are one of several unethical practices that occurred in the 20th century that has helped outlaw such practices. Well done!