This picture was taken on Friday, May 16, 1997 with President Clinton (left) and Vice President Al Gore (center) reaching out to Herman Shaw, 94, a Tuskegee Syphilis Study victim, during a news conference in Washington. Making amends for a shameful U.S. experiment, Clinton apologized to African American men whose syphilis went untreated by government doctors. (AP Photo/Doug Mills, File)
Overview
In the Tuskegee syphilis study, doctors studied the natural progression of syphilis in African Americans and wanted to determine if syphilis progressed differently in them compared to white people. The clinical study, which lasted from 1932 to 1972, took place at Tuskegee University in Alabama, and it was approved by the U.S. Public Health Service (PHS). It involved 600 men from Macon County, Alabama: 399 men had syphilis and were the experimental group while 201 men did not and served as the control group (Britannica Academic 2017). When the research began, there were no treatments for syphilis. In 1947, penicillin became the standard treatment, but subjects were prevented from receiving the drug in order to continue the study to see if there were racial differences. The controversial research led to changes in research practices and ethical standards.
Background
Syphilis is a bacterial infection that can be transmitted sexually between partners or congenitally between mother and fetus. The infectious disease that can be passed via contact with a syphilitic chancre, a painless sore that contains syphilis-causing bacteria, usually located on the genitals (Mayo Clinic 2017). There are three stages of untreated syphilis. The first stage is characterized by chancre sores while the second stage includes the development of rashes throughout the body. Later, the disease becomes latent and earlier symptoms disappear. However, the bacteria can reemerge in the final stage and wreak havoc on the body, causing blindness, dementia, numbness, paralysis, and even death (Mayo Clinic 2017).
The Tuskegee Syphilis Study began in pursuit of scientific knowledge to determine if syphilis progressed differently in African Americans, but researchers did not seriously consider the harm nor informed consent in these populations. They hypothesized that whites would have more neurological complications from syphilis while blacks would experience more cardiovascular issues. At the time, scientists did not think many non-scientists could understand the complexities of research and took advantage of poor and uneducated African Americans. Researchers told subjects that they suffered from “bad blood,” which referred to a variety of illnesses, rather than syphilis. As compensation, subjects received free medical care, transportation to clinic, food, and burial insurance (Britannica Academic 2017). Most participants never had any type of insurance, and the burial insurance provided an incentive for them to stay in the study. It also benefited researchers, so they were alerted of any death and could perform an autopsy. Before, many subjects died at home and were buried without any autopsy. PHS intended the study to last only six to nine months and originally provided rudimentary treatment using arsenic, bismuth, and mercury (Britannica Academic 2017). However, the research did not produce useful results during the timeframe, so all treatment stopped and scientists planned to observe subjects indefinitely. In 1934, the U.S. Surgeon General launched a national public health campaign to test people for syphilis (Gray 2002, 59). However, this operation purposely did not reach Macon County, Alabama because years before the campaign, researchers had circulated all the subjects’ names to local hospitals, so participants could not receive any type of treatment. Researchers implemented this rule because their results could be tainted if subjects received treatment, and their main objective was to record the natural development of syphilis. Subjects could only meet with government doctors. They received medicine that the physicians claimed was penicillin, but the drugs were aspirin or other ineffective medication for syphilis. Since the men did not get penicillin, they infected their wives, children, and many others, and over one hundred subjects died because their disease reached the final stage.
This research study continued for forty years, and nothing scientifically important resulted from the study. In 1970, the assistant chief of the Venereal Disease Branch Dr. James B. Lucas said the experiment was “bad science” because it had been contaminated by treatment (Jones 1998, 202). While patients did not get treatment for syphilis, they received penicillin for treating other health illnesses. Dr. Lucus concluded that “nothing learned [from the study] will prevent, find, or sure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States” (Jones 1998, 202). Even though he realized that the results were contaminated, he wanted to continue with the study as long as there were a significant number of patients alive.
In July 1972, the New York Times released a story concerning the unethical study and set off a worldwide uproar. The first protest against the study actually occurred in 1965 when a young doctor named Irwin Schatz read about the study in a medical journal and sent a scathing letter to the study’s authors about it (Kaplan 2015). However, the letter was ignored and no reply was sent. Peter Buxtun, a health service employee, brought the story to international attention. He worked in San Francisco, and PHS hired him to interview patients with sexually transmitted diseases. He learned about the Tuskegee study from his co-workers, and he filed an official protest with the Division of Venereal Diseases in 1966, but it was rejected on the grounds that the study had not completed yet. He filed another protest later, but it was also rejected. In 1972, Buxtun leaked information about the study to Jean Heller, a journalist for the Washington Star, and the story was picked up by several other newspapers (Thomas, 1991). It made front-page news on the New York Times the next day.
Different Perspectives and Controversies Regarding the Study
An Ad Hoc Advisory Panel was created to review the study and found many ethical issues. The men never gave informed consent during the study. They did not know the official name of the study (“Tuskegee Study of Untreated Syphilis in the Negro Male”) or life-threatening consequences (Britannica Academic 2017). Patients did not have the option to quit the study when penicillin became readily available. Dr. R.H. Kampmeier, who served as the president of the American College of Physicians and a doctor at Vanderbilt hospital, defended the study by claiming that scientists had limited knowledge of penicillin’s effectiveness on latent syphilis, so penicillin may have been useless for men who had syphilis for such an extended period (Allan 1978, 27). Also, subjects did not have to undergo early syphilis treatment, which was toxic. Before penicillin was discovered, arsenic and mercury were used to treat syphilis, but they are poisons to the body. Some defended that the men would not have access to penicillin anyways because they were poor and uneducated (Allan 1978, 27). In October 1972, the study officially concluded. Due to the overwhelming negativity surrounding the study and a large amount of evidence against PHS, the agency began admitting its errors, and outside groups involved in the study tried to shift the blame to PHS so they could avoid undesirable attention (Gray 2002, 100). A class-action lawsuit was filed in 1973 because of the ethical violations in the study, and the U.S. government paid $10 million for reparations as well as provided free medical care to surviving participants and their family as a result of the study. The Tuskegee Health Benefit Program (THBP) was established to provide for these services. In May 1997, President Bill Clinton apologized on behalf of the nation. In 1974, US Congress passed the National Research Act, which required an Institutional Review Board (IRB) to approve any study that involved human subjects (Britannica Academic 2017). The act also included guidelines to properly choose human subjects for participation and defined how informed consent should be sought in research.
The deep deception in the Tuskegee study lead to some exaggerations and confusion of truths, such as claims that the doctors even infected healthy subjects with syphilis. However, they observed men who already acquired the disease. America’s history of racism and power subjugation makes this story believable. The Public Health Service approved a study that intentionally infected vulnerable men and women without their consent, but that study took place in Guatemala from 1946 to 1948. Another important distinction is that doctors in that study also treated them with penicillin that was supposed to cure the subjects (Reverby 2011, 9).
Politics of Health
The Tuskegee syphilis study relates to the politics of health because shows the lack of consent regarding underprivileged populations. Nurse Rivers, who assisted in the study, noticed that people eagerly showed up for blood tests because many did not know what they were and hoped to receive any type of medical attention (Gray 2002, 50). Nurse Rivers was the only staff person who worked with participants for the full 40 years of the study. This study also connects back to the idea of race as a biological concept rather than a sociological one. Since scientists thought race played a role in the progression of syphilis, they created this study in the first place. Racism in medicine played a large role because scientists saw blacks as inferior and acceptable subjects whereas they would not have made the same decision if the subjects were white. The study did not serve much scientific purpose and in fact “revealed more about the pathology of racism than it did about the pathology of syphilis” (Allan 1978, 27). The researchers preyed on the poor African Americans’ hopes of receiving free medical care, which is one of the motivating reasons for clinical study participation today. While consent forms exist now, current medical studies still involve disadvantaged population without full understanding of risks (Fisher 2007, 195-196). The Tuskegee syphilis experiment played a huge role in revolutionizing research methods to ensure the wellbeing and informed consent of subjects.
Note: This post was revised on 4/20/17 by Andrea Zhang.
References
Allan M. Brandt. 1978. “Racism and research: The case of the Tuskegee Syphilis study.” The Hastings Center Report 8 (6): 21-29.
Britannica Academic. “Tuskegee syphilis study.” Encyclopedia Britannica. Accessed January 22, 2017. http://academic.eb.com/levels/collegiate/article/2212.
Fisher, J. A. ““Ready-to-Recruit” or “Ready-to-Consent” Populations?: Informed Consent and the Limits of Subject Autonomy.” In The Pharmaceutical Studies Reader, edited by Sergio Sismondo and Jeremy A. Greene, 195-207. 1st ed. New York: Wiley-Blackwell, 2015. ProQuest ebrary. Web. 19 January 2017.
Gray, Fred D. 2002. Tuskegee Syphilis Study: The Real Story and Beyond. Montgomery, US: NewSouth, Incorporated. Accessed January 23, 2017. ProQuest ebrary.
Kaplan, Sarah. “Dr. Irwin Schatz, the first, lonely voice against infamous Tuskegee study, Dies,” The Washington Post, April 20, 2015. Accessed April 19, 2017.
Jones, James H. 1993. Bad Blood: The Tuskegee Syphilis Experiment. New York: The Free Press.
Mayo Clinic. “Syphilius.” Diseases and Conditions. Accessed January 22, 2017. http://www.mayoclinic.org/diseases-conditions/syphilis/symptoms-causes/dxc-20234443.
Susan M. Reverby. 2011. “”Normal Exposure” and Inoculation Syphilis: A PHS “Tuskegee”
Doctor in Guatemala, 1946-1948.” Journal of Policy History 23 (1): 6-28. Accessed January 22, 2017.
Thomas, Stephen and Sandra Quinn. 1991. “The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community.” American Journal of Public Health 81 (11): 1498-1501. doi:10.2105/AJPH.81.11.1498
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