Fifty years ago, in July 1972, the disturbing details of what was originally known as the “Tuskegee Study of Untreated Syphilis in the Negro Male,” were first reported by the Washington Star. The study had been initiated by the US Public Health Service (PHS), the precursor agency of the present-day Centers for Disease Control and Prevention (CDC), in 1932 — which meant the research had then been underway for 4 decades. The day after the story broke in the Star, it became front page news in the New York Times.1

Until these newspaper stories were published, the fact that the PHS was deliberately denying syphilis treatment to 399 Black men for research purposes — and causing suffering and death in the process — had been unknown to the general public, although not to prominent researchers and members of the medical community. Peter Buxton, a social worker hired by PHS to interview patients with venereal disease, brought the story to the Star only after his ethical concerns regarding the Tuskegee study were repeatedly dismissed, both by his superiors at PHS and by a blue-ribbon panel of physicians assembled by PHS, who concluded that the study should be continued.1

The Tuskegee study “is a story that needs to stay forever on the moral horizons of medical scientists, yet many young investigators know little of its details or lessons,” wrote Martin J. Tobin, MD, in an article providing a detailed history of the study in the May 2022 American Journal of Respiratory and Critical Care Medicine.1 Dr Tobin, a professor of pulmonary and critical care medicine at the Stritch School of Medicine at Loyola University Chicago, who is the author of numerous critical care textbooks, was described by the New York Times as a “world-renowned expert on breathing” following his testimony about the death of George Floyd at the trial of Minneapolis police officer Derek Chauvin.2


Continue Reading

In addition to publishing the journal article on the Tuskegee study, Dr Tobin also presented on the topic at the American Thoracic Society (ATS) 2022 International Conference. The video of his presentation can be accessed by a link within his paper.1

Prominent US Researchers Lead 2 Harmful, Unethical Studies

As Dr Tobin details in his article, the study now known as the “USPHS Syphilis Study at Tuskegee,” which was conducted in collaboration with the Tuskegee Institute in Alabama, sought to study the natural history of syphilis. Of the 600 Black men who comprised the initial research sample, 399 had syphilis — but did not know it — while the remaining men were part of the control group.1

The PHS had offered these men free meals, free medical exams, and burial insurance in exchange for their participation.3 The men involved were never told the true purpose of the study. “On the contrary, PHS researchers deceived the men into believing they were being treated for ‘bad blood,’ a colloquialism for several ailments,” and “misled the men into believing that the medications they received (vitamin tonics and aspirin as placebo) were effective against their disease,” explained Dr Tobin.1

As the original study name suggests, the men in the study with syphilis remained untreated even after penicillin became the treatment of choice for the disease in the 1940s — and they also remained unaware that they had syphilis. As a result of these actions, the victims experienced enormous suffering and death that could have been easily prevented with proper diagnosis and treatment.1

“By 1969, at least 28 and perhaps 100 men had died as a direct result of syphilis; despite this knowledge, the government scientists continued the experiment,” wrote Dr Tobin.1

After the Tuskegee story was publicized, an advisory panel of the Department of Health, Education, and Welfare recommended termination of the research in October 1972. The following year, congressional hearings regarding the study “led to the passage of the National Research Act and, in turn, the establishment of institutional review boards, principles of informed consent, and protection of vulnerable populations,” said Dr Tobin in his recent article. The article, which provides names of many of the researchers and PHS officials involved in the study, also notes that none of the researchers involved in the experiment were held legally responsible.1

Should anyone assume that the choices and actions of the key players in this scandal were simply misguided, Dr Tobin firmly dispels this notion in his article. In addition to detailing the unethical harms perpetrated by the Tuskegee researchers and the profound indifference demonstrated by the scientific and medical communities at large, he describes recently revealed experiments led by the same scientists and researchers in Guatemala in the 1940s — in which US investigators deliberately tried to infect at least 1300 people with syphilis, gonorrhea, or chancroid “with the goal of developing better methods for preventing these infections.”1 Experiments were conducted on women involved in prostitution, men in prison, patients in a mental hospital, and children in the national orphanage, and resulted in at least 83 deaths, Dr Tobin’s article reports.1

In an interview with Pulmonology Advisor, Dr Tobin discussed what contemporary clinicians and scientists need to understand about these studies and their implications.

“Everything a person needs to know about bioethics or the action and inaction of bystanders is contained in the Tuskegee story.”

– Dr Martin J. Tobin, professor of pulmonology at the Stritch School of Medicine at Loyola University Chicago

Key Takeaways for Present-Day Researchers

In your article on the Tuskegee and Guatemala studies of syphilis and gonorrhea, you detail the moral and professional lapses and unethical and harmful behavior of investigators involved in the Tuskegee experiment — professionals who were then highly regarded in their fields. You also provide details about a second, similar study in Guatemala. Why has it been important to you to share a detailed history of the Tuskegee and Guatemala experiments with other clinicians — and what are the key takeaways for clinicians?

Dr Tobin: Everything a person needs to know about bioethics or the action and inaction of bystanders is contained in the Tuskegee story.

I have been doing research on patients for over 40 years, involving face-to-face manipulations and often producing pain, for the purpose of generating new scientific knowledge. Patients willingly — indeed gladly — participate in such experiments in the hope that the information will help in the care of other patients in the future.  

I also served as an editor-in-chief of the American Journal of Respiratory and Critical Care Medicine from 1999 to 2004, during which time I had to police a substantial number of ethical transgressions, often imposing penalties on researchers. As such, I have had a long-standing awareness of the altruism of patients in their willingness to volunteer for uncomfortable research, and also an awareness that some researchers consider the pursuit of science more important than the humanity of patients.  

No episode in the last 100 years of medicine highlights the problems of research ethics more vividly than does the Tuskegee study. I wanted to analyze the details of the Tuskegee study and also the voluminous records generated by the Guatemala experiments in order to gain insight into how physicians could persuade themselves that these types of experiments were acceptable to carry out, how a succession of new physicians who worked on the Tuskegee study could be corralled into continuing research across 40 years and not raise questions, and how a succession of directors of the CDC could allow the Tuskegee study to continue until 1972.  

The PHS-CDC investigators elevated science to a moral cause that was more important than looking on enrollees as patients and fellow human beings. They were part of a research mentality that led doctor-researchers to believe they had the right to decide who would live and who would die.  

Honoring Victims, Minimizing Harm

You have noted that by using the name “Tuskegee” in title of the study, the Tuskegee “university and townspeople are touched by a legacy of shame.” Your further suggest that “it would be more accurate to label the experiment after the perpetrators: the Public Health Service Study of Partially Treated Syphilis.” What are some other ways that researchers and clinicians can honor the victims and minimize harm to descendants and others affected by this study?

Dr Tobin: Our first duty is to remember what happened to the 400 Tuskegee men and their families. Citizens have an obligation to remember the victims of any major catastrophe, as people do with 9/11. The men in Tuskegee suffered major injury, including death, at the hands of the premier health arm of the US government. Failure to remember what happened to these men adds another layer of injury to what they already endured. Today, there is much discussion about financial reparation for all kinds of ills that happened in the past, which most of us cannot influence. But writers can achieve historical reparation by relaying the story of a catastrophe to a new generation of readers.  

[Several] weeks ago, I attended the annual meeting of the ATS, and I had a colleague tell me that I have done a disservice to researchers by writing about the Tuskegee and Guatemala experiments, that it would be better to keep these episodes hidden under the rug. On the contrary, knowledge of history is our best defense against future errors and transgressions.  

Blame, Responsibility, and the Role of Bystanders

In your article, you name many prominent physicians and scientists at PHS and US surgeon generals who initiated, continued, oversaw, and overlooked the experiments taking place in Tuskegee and Guatemala. Yet can blame be assigned solely to these individuals? What can be learned from these horrific experiments about the role of bystanders?

Dr Tobin: The [Tuskegee] story provides a vivid narrative with real-life characters – victims, villains, and a hero – and readers can relate these characters to people they encounter in their daily lives. Paradoxical though it may seem, scandals provide powerful instruction about research ethics because scandals put a human face on the abstract principles that are being transgressed.  

The role of bystanders is especially important in the Tuskegee and Guatemala studies. Readers look at these events and search for a culprit they can blame. Designating Dr [John] Cutler [a leading researcher in the Guatemala experiments who deliberately infected healthy people with syphilis and gonorrhea]1 or Dr [Raymond] Vonderlehr [a leading researcher in the Tuskegee study who falsely told participants that lumbar punctures to check for neurosyphilis were therapeutic]1 as the only bad guys misses the deeper significance of these studies.

It is not the bad guys but the good guys — the bystanders — that are the real problem. The continuation of the Tuskegee study across 40 years is far more dependent on the actions of the numerous investigators like Dr Walter Edmondson [a new PHS investigator pictured drawing blood from a Tuskegee study participant in 1953 photographs] than the 1 or 2 doctors like Dr Vonderlehr performing deceptive lumbar punctures. The men in the Tuskegee study were still being lied to and deprived of treatment for another 29 years after the 1953 photographs.

Commenting on his own experience in Auschwitz, Primo Levi remarked: “Monsters exist. But they are too few in number to be truly dangerous. More dangerous are the functionaries [or bystanders] ready to believe and to act without asking questions.”4

Many Knew, Yet No One Spoke UpCould This Happen Again?

Your article notes that despite the publication of 15 journal articles over 37 years that described the “ravages of untreated syphilis,” not one physician or scientist in the world published a letter to question or criticize the Tuskegee experiment. Can you say a bit more about that and how present-day physicians and scientists can purposefully avoid “moral inertia” and cultivate “moral imagination,” as mentioned in your paper?

Dr Tobin: Seeing how successive generations of new medical researchers failed to raise questions about the Tuskegee study should make us realize how vulnerable we are as human beings. We need to look on the study with a sense of vulnerability and humility rather than moral outrage.

Each of us is susceptible to falling into the trap of placing ourselves on the side of the angels. We suspect that other people could behave badly, but we persuade ourselves that we would never transgress in that manner if placed in the same situation. The first preventive step is to recognize our own vulnerability, to realize “I am very vulnerable — I can easily slide into a situation of committing dreadful wrongs.”  

The National Institutes of Health, the CDC, and medical schools like to reassure the public that serious ethical transgressions, such as happened in Tuskegee and Guatemala, will never happen again because present-day regulations will prevent such occurrences. All the regulations in the world will not compensate for the conscience of the individual investigator who is conducting the research study. Filling out paperwork generated by institutional review boards is necessary, but it is not sufficient to prevent scientific misconduct.    

Teaching children to distinguish between right and wrong is a major obligation of a parent. Allied with this is the inculcation of a sense of shame about bad behavior. The same considerations apply to a mentor who guides a young person starting out in a research career.  I have trained dozens of research trainees over my career. Trainees learn more from watching what a mentor does rather than from the verbal advice the mentor gives.

Particularly important in acquiring conscience as a research trainee is to watch what lines a mentor will not cross and why the mentor will not cross those lines. After a young person completes training and joins a university faculty or a research group, the individual has to repeatedly ask him or herself, “Is this project right?” Just because other colleagues are doing something does not make it right — instead, each investigator must constantly ask himself or herself, “Is my study ethical?”  

The key step in moral imagination is to imagine oneself in the shoes of an endangered individual. It is difficult to believe that the physicians who conducted experiments on the women in Guatemala would have contemplated doing the same experiments on their own sisters. Moral imagination requires a leap of faith, to imagine that you could be the Guatemala prostitute that is having a gonorrhea-encrusted probe inserted into her cervix as opposed to the investigator who is inserting it.  

Moral inertia and moral imagination are 2 sides of the same coin. Many factors lead to moral inertia, including careerism, groupthink, and obedience. Many people prefer comfort to truth — they are too pleased with their own small privileges to risk losing them by asking troublesome questions. But silence is complicity. Indifference and neutrality help the oppressor, never the victim. In my article, I discuss how, after Peter Buxtun went to law school, he discussed the Tuskegee study with several law professors [before he ultimately contacted the press].1 They were “sympathetic but offered little encouragement — an illustration of Ian Kershaw’s adage that the road to Auschwitz was paved with indifference.”

The Willpower to Act

You wrote that when facing ethical challenges, we must “remember to pause and think, reflect and examine our conscience, and have the courage to speak and, above all, the willpower to act.”1 What are the implications of this statement for clinicians and researchers in today’s world?

Dr Tobin: It is easy to articulate these 3 steps but carrying them out requires a willingness to place oneself in jeopardy, a willingness to risk getting into trouble with supervisors and even losing one’s job.  Conscience and courage are ineffective if a person does not have the willpower to act. People persuade themselves that they do not have the resources or power to act, to make a difference.

In my article, I give the example of Anthony Lake, President Clinton’s advisor during the Rwanda genocide. Mr Lake had a reputation as a leader of conscience, and he held enormous power during the time of the genocide. Afterwards, he appeared to be unaware that he had failed to act.

People forget that all their actions are under their own control.1 They deceive themselves into believing they lack freedom, and so deny their responsibilities. Jean-Paul Sartre observed that cowards and heroes are not born, they are defined in action.5

References

  1. Tobin MJ. Fiftieth anniversary of uncovering the Tuskegee Syphilis Study: The story and timeless lessons. Am J Respir Crit Care Med. 2022;205(10):1145-1158. doi:10.1164/rccm.202201-0136SO
  2. Fazio M. Dr. Martin J. Tobin, a pulmonologist, says shallow breathing led to George Floyd’s death. New York Times. Published April 8, 2021. Accessed online July 14, 2022.
  3. The Centers for Disease Control and Prevention. The Tuskegee timeline. Accessed online June 16, 2022.
  4. USC Marshall. The International Holocaust Remembrance Day. Accessed online June 16, 2022.
  5. Stokes P. 100 Great Philosophers Who Changed the World. Arcturus. 2020.

This article originally appeared on Pulmonology Advisor