Feb 16th 2021

Reflections on the Tuskegee Study and Its Moral Harm

by Sam Ben-Meir

Sam Ben-Meir is professor of philosophy and world religions at Mercy Collage in New York.


Black History Month challenges all of us to learn, reflect and understand many things about the Black American experience, among them the Tuskegee Syphilis Study. This outrage, perpetrated by the US Public Health Service, was not conducted for a year or even a decade – it went on for forty years.

Originally intended to be a six-month study, the Tuskegee experiment conducted in Macon County, Alabama, lasted from 1932 to 1972, and initially involved 600 Black American men – 399 with syphilis, 201 who did not have the disease but were part of the control group. While the men agreed to be examined and treated for “bad blood” (a local term which included anemia, fatigue and syphilis), researchers never informed them of the study or its actual purpose. It was conducted, from beginning to end, without the patients’ informed consent.

Those who were infected were never told they carried latent syphilis, and they were never treated for the disease, even after penicillin was conclusively shown by the mid-1940s to effectively treat syphilis. Not only did the scientists conducting the study withhold the antibiotic and information about it from the patients, they deliberately prevented participants from making use of syphilis treatment programs which were available in the area. As one commentator stated: “deceit was integral to the study.”

Peter Buxtun, an epidemiologist at the USPHS, filed an official protest on ethical grounds in 1966 and again in 1968 but was twice rejected. In 1972, he finally leaked information on the study to the Associated Press and only after a significant public outcry did the USPHS end the program. Studies now require informed consent, communication of diagnosis and the reporting of test results – but Tuskegee reverberates to this day, having understandably damaged the trust of many Black Americans in their medical providers and in the US government on issues relating to their healthcare.

This study was no well-kept secret.  At least thirteen reports on the experiment appeared in scientific journals; and in most of these articles, researchers would refer to their program as precisely what it was: the “Tuskegee Study of Untreated Syphilis in the Male Negro.” The first report of the study appeared in 1936, and subsequent papers followed every four to six years, including through the 1960s. For four decades, no one sounded the moral alarm. No one publicly questioned how the program was being permitted to continue with the blessing of both the USPHS and the Center for Disease Control, which even in in 1969 determined that the research should continue. Indeed, the Tuskegee experiment was a secret only to the subjects of the study—poor, sick, and largely illiterate Black Americans.

The program’s purpose was to track the natural history of untreated syphilis in Black males. When the study began in 1932, syphilis had no effective treatment; but by 1943, penicillin had been used in the US to effectively cure the disease, and yet at no point were subjects ever given the choice of quitting the study in favor of this new and promising treatment. What the patients were instead prescribed was “fairly horrific” – namely, excruciatingly painful and dangerous spinal taps, which the Tuskegee researchers referred to as “special treatment,” that in some cases led to paralysis.

During World War II, researchers actively began preventing their subjects from accessing treatment ordered under the military draft effort. Instead, patients were tempted to remain within the program with the promise of free examinations and therapy, hot meals, and an offer of burial insurance – amounting to fifty dollars to pay for a casket and grave.

As a result, these men were completely unaware that they had put their lives in the hands of doctors who not only had no intention of healing them but were committed to observing them until the final autopsy – since it was believed that an autopsy alone could scientifically confirm the study’s findings. As one researcher wrote in a 1933 letter to a colleague, “As I see, we have no further interest in these patients until they die.”

The unquestionable ethical failure of Tuskegee is one with which we must grapple, and of which we must never lose sight, lest we allow such moral disasters to repeat themselves. One way we can begin to understand the moral harm that occurred is through the Kantian principle of dignity, which our government grossly and systematically violated at Tuskegee. The principle states that a person must never be treated simply as a means, but always also as an end in and of themselves. This principle is precisely what the US government failed to uphold by adopting a purely instrumental relationship to the patients – in a word, they were not treated as people, possessed with intrinsic self-worth, and capable of self-determination.

Tuskegee had predictably tragic consequences for the men who were part of the study, a number of whom died from advanced syphilitic lesions, while others went blind and insane. Worse still, because the subjects were never told that they actually carried the sexually transmitted disease or that they were contagious, their wives also became infected. Perhaps most disturbing of all is that many of the patients’ children were consequently born with congenital syphilis. The experiment’s consequences were so far-reaching in part because the Tuskegee study was undoubtedly the single longest experiment on human beings in the history of medicine.

What makes Tuskegee so morally abhorrent is that it was, from beginning to end, a racially driven experiment that targeted a vulnerable group. If the subjects had been white, how long would the study have continued? If the subjects had been white, would the doctors have systematically deceived them and allowed them to go on year after year receiving no treatment, so that they could observe the disease take its natural and devastating course? It is an utterly implausible suggestion, because the entire study was premised on the myth of “Negro inferiority,” and that Black men possess an excessive sexual desire. As Allan M. Brandt concluded in 1978, “the Tuskegee researchers regarded their subjects as less than human.”

Yet, to this day, the Tuskegee Syphilis Study has its defenders. In 2004, Richard Shweder, a cultural anthropologist at the University of Chicago, offered a revisionist account of Tuskegee – arguing, among other things, that standards of consent were not violated because “in 1932 the concept of informed consent had not even been imagined by medical professionals.”

In point of fact, his statement is simply untrue, as Charlotte Paul and Barbara Brookes have pointed out in “The Rationalization of Unethical Research.” Richard C. Cabot, a Harvard professor of medicine, observed already in 1928, that “experimentation upon a human being without his consent and without the expectation of benefit to him is without any ethical justification.” And Cabot was certainly not the first to insist upon the necessity of informed consent in the clinical research setting, or where human experimentation is involved.

The crucial point, however, is that we cannot afford to assume that the lessons of Tuskegee will be evident to all or for all time. What occurred was a moral catastrophe that did untold harm to people who were already especially vulnerable. Recent attempts to rationalize or defend what occurred only serve to underscore how imperative it is that we continue to revisit the Tuskegee program and examine the moral implications of what took place.

Ethical codes and requirements that emerged in the wake of Tuskegee are of great importance of course – but they do not function as guarantees that grave moral lapses on the scale and scope of Tuskegee will not reoccur. Indeed, we risk repetition of such moral travesties precisely when we conclude that we have safely inoculated ourselves against them. We must remember Tuskegee, continue to reawaken and deepen our understanding of it, and honor its victims by remaining vigilant against such injustices in the future.

 

Browse articles by author

More Essays

Feb 24th 2021
EXTRACT: "The art historian George Kubler observed that scholars in the humanities “pretend to despise measurement because of its ‘scientific’ nature.” As if to illustrate his point Robert Storr, former dean of Yale’s School of Art, declared that artistic success is “completely unquantifiable.” In fact, however, artistic success can be quantified, in several ways. One of these is based on the analysis of texts produced by art scholars, and this measure can give us a systematic understanding of how changes in recent art have produced changes in the canon of art history."
Feb 24th 2021
EXTRACT: "The most politically sensitive option we looked at was the virus escaping from a laboratory. We concluded this was extremely unlikely."
Feb 16th 2021
EXTRACT: ".... these men were completely unaware that they had put their lives in the hands of doctors who not only had no intention of healing them but were committed to observing them until the final autopsy – since it was believed that an autopsy alone could scientifically confirm the study’s findings. As one researcher wrote in a 1933 letter to a colleague, “As I see, we have no further interest in these patients until they die.” ...... The unquestionable ethical failure of Tuskegee is one with which we must grapple, and of which we must never lose sight, lest we allow such moral disasters to repeat themselves. "
Feb 14th 2021
EXTRACT: "In 2010 Carlos Rodriguez, the president of Buenos Aires' Universidad del CEMA, created the world's first - and only - Center for Creativity Economics.  During the next ten years, the CCE presented a number of short courses and seminars.  But the most important of its events was an annual lecture by an Argentine artist, who was given a Creative Career Award."
Feb 11th 2021
EXTRACT: "It’s not hard to see why. Although AI systems outperform humans in tasks that are often associated with a “high level of intelligence” (playing chess, Go, or Jeopardy), they are nowhere close to excelling at tasks that humans can master with little to no training (such as understanding jokes). What we call “common sense” is actually a massive base of tacit knowledge – the cumulative effect of experiencing the world and learning about it since childhood. Coding common-sense knowledge and feeding it into AI systems is an unresolved challenge. Although AI will continue to solve some difficult problems, it is a long way from performing many tasks that children undertake as a matter of course."
Feb 7th 2021
EXTRACT: "When it comes to being fit and healthy, we’re often reminded to aim to walk 10,000 steps per day. This can be a frustrating target to achieve, especially when we’re busy with work and other commitments. Most of us know by now that 10,000 steps is recommended everywhere as a target to achieve – and yet where did this number actually come from?"
Feb 5th 2021
EXTRACT: "This so-called elite supposedly conspires to monopolise academic employment and research grants. Its alleged objective is to deny divine authority, and the ultimate beneficiary and prime mover is Satan.Such beliefs derive from the doctrine of biblical infallibility, long accepted as integral to the faith of numerous evangelical and Baptist churches throughout the world, including the Free Church of Scotland. But I would argue that the present-day creationist movement is a fully fledged conspiracy theory. It meets all the criteria, offering a complete parallel universe with its own organisations and rules of evidence, and claims that the scientific establishment promoting evolution is an arrogant and morally corrupt elite."
Jan 29th 2021
EXTRACT: "Ageing is so far known to be caused by nine biological mechanisms, sometimes called the “hallmarks of ageing”. In order to prevent ageing in our tissues, cells, and molecules, we need to be able to slow or prevent these hallmarks of ageing from taking place. While there are numerous treatments currently being investigated, two approaches currently show the most promise in slowing the development of age-related disease. .... One area researchers are investigating is looking at whether any medicines already exist which could tackle ageing. This method is advantageous in that billions of pounds have already been spent on testing the safety and efficacy of these drugs and they are already in routine clinical use in humans. Two in particular are promising candidates."
Jan 23rd 2021
EXTRACT: "The ageing global population is the greatest challenge faced by 21st-century healthcare systems. Even COVID-19 is, in a sense, a disease of ageing. The risk of death from the virus roughly doubles for every nine years of life, a pattern that is almost identical to a host of other illnesses. But why are old people vulnerable to so many different things? It turns out that a major hallmark of the ageing process in many mammals is inflammation. By that, I don’t mean intense local response we typically associate with an infected wound, but a low grade, grinding, inflammatory background noise that grows louder the longer we live. This “inflammaging” has been shown to contribute to the development of atherosclerosis (the buildup of fat in arteries), diabetes, high blood pressure , frailty, cancer and cognitive decline."
Jan 20th 2021
EXTRACT: "Anthropos is Greek for human.... The term is used to convey how, for the first time in history, the Earth is being transformed by one species – homo sapiens. ...... The idea of the Anthropocene can seem overwhelming and can generate anxiety and fear. It can be hard to see past notions of imminent apocalypse or technological salvation. Both, in a sense, are equally paralysing – requiring us to do nothing. .. I consider the Anthropocene as an invitation to think differently about human relationships with nature and other species. Evidence suggests this reorientation is already happening and there are grounds for optimism."
Jan 7th 2021
EXTRACT: "During the second world war, Nazi Germany banned all listening to foreign radio stations. Germans who overlooked their duty to ignore foreign broadcasts faced penalties ranging from imprisonment to execution. The British government imposed no comparable ban which would have been incompatible with the principles for which it had gone to war. That’s not to say, though, that it wasn’t alarmed by the popularity of German stations. Most effective among the Nazis broadcasting to the UK was William Joyce. This Irish-American fascist, known in Britain as “Lord Haw-Haw”, won a large audience during the “phoney war” in 1939 and early 1940, with his trademark call sign delivered in his unmistakable accent: 'Jairmany calling, Jairmany calling'. "
Jan 6th 2021
EXTRACTS: "The revelation of Trump’s hour-long recorded call with Brad Raffensperger, Georgia’s Secretary of State, over this past weekend crossed a new line – a line that not only set a high-water mark of moral reprehensibility, but a legal line as well, specifically in his pressuring Raffensperger to 'find the 11,780 votes' that would hand Trump the state and his veiled threat (' it’s going to be very costly…') if Raffensperger failed to comply. ........ Raffensperger – who has been forced to endure intense pressure, intimidation and threats – has proven himself to be a man of integrity and principle."
Jan 6th 2021
EXTRACT: "A final, perhaps more sinister, possibility is that Johnson knows exactly what he is doing. His political style evokes a unique blend of dishevelled buffoon and privileged Etonian. He is someone who likes to bring good news and doesn’t take life too seriously. Making tough, controversial decisions threatens this persona and so hiding in the shadows until his hand is forced helps him to reconcile his identity threat."
Dec 21st 2020
EXTRACT: "The resultant loss of land, the growing impoverishment of its citizens, and the hostile actions of Israeli occupation forces and settlers have forced many Bethlehemites to leave their beloved city and homeland. Given these accumulated violations of human rights and their impact on Christians and Muslims, alike, one might expect Christians in the West to speak out in defense of these residents of the little town they celebrate each year.  That, sadly, is not to be – most especially (and I might add ironically) among powerful Christian conservative groups in the US which, after all, claim to be the defenders of their co-religionists world-wide."
Dec 7th 2020
EXTRACT: "Worldwide, people donate hundreds of billions of dollars to charity. In the United States alone, charitable donations amounted to about $450 billion last year. As 2020 draws to a close, perhaps you or members of your family are considering giving to charity. But there are, literally, millions of charities. Which should you choose?"
Dec 1st 2020
EXTRACT: " The Museum of Modern Art is currently presenting Félix Fénéon: The Anarchist and the Avant-Garde – From Signac to Matisse and Beyond, examining the immense influence of this art critic, editor, publisher, collector and anarchist............A crucial feature of anarchism is the emphasis on the individual as the fundamental building block, the essential point of departure for any human association whatever. The individual was characterized by Grave in 1899 as a social creature who should be “left free to attach himself according to his tendencies, his affinities, free to seek out those with him whom his liberty and aptitudes can agree.” "
Nov 25th 2020
EXTRACT: "As the pandemic raged in April, churchgoers in Ohio defied warnings not to congregate. Some argued that their religion conferred them immunity from COVID-19. In one memorable CNN clip, a woman insisted she would not catch the virus because she was “covered in Jesus’ blood”. "
Nov 18th 2020
EXTRACT: "Here are just a few ways exercise changes the structure of our brain."
Nov 15th 2020
EXTRACT: "Perhaps it is Piller’s discovery that when it comes to war there is no such thing as innocence...."