Feb 16th 2021

Reflections on the Tuskegee Study and Its Moral Harm

by Sam Ben-Meir


Sam Ben-Meir is an assistant adjunct professor of philosophy at City University of New York, College of Technology.


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

Mar 8th 2024
EXTRACT: "This study suggests that around 10% of people diagnosed with dementia may instead have underlying silent liver disease with HE causing or contributing to the symptoms – an important diagnosis to make as HE is treatable."
Jan 28th 2024
EXTRACT: "Health disparity is a powerful weapon in the savage class warfare otherwise known as neoliberalism. (In 2020, the RAND Corporation did a study of the transfer of wealth over the last several decades from the working-class and the middle-class to the top one percent. Their estimate is a staggering $47 trillion – that is how much the “upward redistribution of income” cost American workers between 1975 and 2018.) Neoliberalism is a brutal form of labor suppression, which uses health as a means of maintaining and reproducing a condition in which wealth is constantly being redistributed upwards, and the middle-class is kept in a constant state of fear of sinking into the ranks of the poor. Medical expenses are the leading cause of bankruptcies in America – and that’s according to the American Bankruptcy Institute. The ballooning costs of healthcare serve to maintain a system marked by morally unacceptable health inequity and injustice."
Jan 28th 2024
EXTRACT. "But living longer has also come at a price. We’re now seeing higher rates of chronic and degenerative diseases – with heart disease consistently topping the list. So while we’re fascinated by what may help us live longer, maybe we should be more interested in being healthier for longer. Improving our “healthy life expectancy” remains a global challenge. Interestingly, certain locations around the world have been discovered where there are a high proportion of centenarians who display remarkable physical and mental health. The AKEA study of Sardinia, Italy, as example, identified a “blue zone” (named because it was marked with blue pen),....."
Jan 4th 2024
EXTRACT: ""Tresors en Noir et Blanc" presents 180 prints from the collection of the Musee des Beaux-Arts de la Ville de Paris, also known as the Petit Palais.  The basis of the museum's print collection is 20,000 engravings amassed by a 19th-century collector, Eugene Dutuit, " ----- "This wonderful exhibition, the tip of a great iceberg, serves to emphasize how unfortunate it is that the tens of thousands of prints owned by the Petit Palais are almost never seen by more than a handful of scholars who visit them by appointment.  Nor is the Petit Palais the only offender in this regard,....."
Jan 4th 2024
EXTRACTS: "And that is the clue to Manet’s work. He paints painting, regardless of his subject: he paints the medium itself, it as if he is constantly reminding us that this is a painting," ..........."This is a new conception of painterly truth at play here, a new fidelity to truth. Manet is the Kant of painting because he initiates a similar kind of “Copernican revolution” – we do not see the world as it is but as we are. " -------- " Among the most remarkable but unfamiliar of Manet’s work on display are those depicting the bloody aftermath of the Paris Commune of 1871.There is no question regarding Manet’s condemnation of the Versailles government’s actions following the defeat of the Commune, when some 25,000 Parisians were gunned down, including women and children."
Dec 27th 2023
EXTRACT: "Think of our brain like a map. When we’re young, we explore all corners of this map, sending out connections in every direction to make sense of our environment. Before long, we figure out basic truths – such as how to secure food, or where we live – and the neurological paths that make up these connections strengthen. Over time, a network emerges that reflects our unique experiences. Regions we re-visit often will develop established paths, whereas under-used connections will fade away. ---- Conditions such as addiction, chronic depression and post-traumatic stress disorder (PTSD) are characterised by processes such as repetitive negative thinking or rumination, where patients focus on negative thoughts in a counterproductive way. Unfortunately, these strengthen brain connections that perpetuate the unfavourable mental state."
Dec 14th 2023
EXTRACT: "While no one was looking, France has become a melting pot of European peoples. Its neighbors have traditionally been welcomed, and France progressively turned them into French boys and girls in the next generation."
Dec 4th 2023
EXTRACTS: "Being rich is essentially about having more stuff in general, including bigger houses." "..... if SUVs had not become widely adopted largely as a status symbol for the global middle classes, emissions from transport would have fallen by 30% over the past ten years. For the largest class of SUVs, six of the ten areas of the UK registering the most sales were affluent London boroughs like Kensington and Chelsea."
Nov 11th 2023
EXTRACT: "By using these “biomarkers”, researchers have discovered that when a person’s biological age surpasses their chronological age, it often signifies accelerated cell ageing and a higher susceptibility to age-related diseases." ----- "Imagine two 60-year-olds enrolled in our study. One had a biological age of 65, the other 60. The one with the more accelerated biological age had a 20% higher risk of dementia and a 40% higher risk of stroke."
Nov 6th 2023
EXTRACT: "We are working on a completely new approach to 'machine intelligence'. Instead of using ..... software, we have developed .... hardware that operates much more efficiently."
Nov 6th 2023
EXTRACTS: "When people think of foods related to type 2 diabetes, they often think of sugar (even though the evidence for that is still not clear). Now, a new study from the US points the finger at salt." ...... ".... this type of study, called an observational study, cannot prove that one thing causes another, only that one thing is related to another. (There could be other factors at play.) So it is not appropriate to say removing the saltshaker 'can help prevent'." ..... "Normal salt intake in countries like the UK is about 8g or two teaspoons a day. But about three-quarters of this comes from processed foods. Most of the rest is added during cooking with very little added at the table."
Oct 26th 2023

 

In 1904, Emile Bernard visited Paul Cezanne in Aix.  He wrote of a conversation at dinner:

Sep 11th 2023
EXTRACT: "Many people have dipped their toe into the lazy gardener’s life through “no mow May” – a national campaign to encourage people not to mow their lawns until the end of May. But you could opt to extend this practice until much later in the summer for even greater benefits. Allowing your grass to grow longer, and interspersing it with pollen-rich flowers, can benefit many insects – especially bees. Research finds that reducing mowing in urban and suburban environments has a positive effect on the amount and diversity of insects. Your untamed lawn won’t only benefit insects. It will also encourage more birds, such as goldfinches, to use your garden to feed on the seeds of common wildflower species such as dandelions."
Aug 30th 2023
EXTRACT: "Eliot remarked that Shakespeare's greatness not only grew as the writer aged, but that his development became more apparent to the reader as he himself aged: 'No reader of Shakespeare... can fail to recognize, increasingly as he himself grows up, the gradual ripening of Shakespeare's mind.' "
Aug 25th 2023
EXTRACTS: "I moved here 15 years ago from London because it was so safe. Bordeaux was then known as La Belle au Bois Dormant (The Sleeping Beauty). It's the wine capital of France and the site of beautiful 18th century architecture arrayed along the Garonne river." ---- "What’s new is that today lawlessness is spreading into the more comfortable neighborhoods. The favorite technique is to defraud elderly retirees by dressing up as policemen, waterworks inspectors or gas meter readers. False badges including a photo ID are easy to fabricate on a computer printer. Once inside, they scoop up most anything shiny as they tip-toe through the house."
Aug 20th 2023
EXTRACT: "The 1953 coup d'etat in Iran ushered in a period of exploitation and oppression that has continued – despite a subsequent revolution that led to huge changes – for 70 years. Each year on August 19, the anniversary of the coup, millions of Iranians ask themselves what would have happened if the US and UK had not conspired all those years ago to overthrow Iran’s democratically elected leader."
Aug 18th 2023
EXTRACT: "Edmundo Bacci: Energy and Light, curated by Chiara Bertola, and currently on view at the Peggy Guggenheim Collection in Venice, is the first retrospective of the artist in several decades. Bacci was a native of Venice, a city with a long and illustrious history of painting, going back to Giorgione and Titian, Veronese and Tiepolo. As a painter, he was thoroughly immersed in this great past – as an artist he was determined to transform and remake that tradition in the face of modernity and its vicissitudes, what he called “the expressive crisis of our time.” That he has slipped into obscurity affords us, at the very least, an opportunity to see Bacci’s work essentially for the first time, without the burden of over-determined interpretations or categories."
Aug 12th 2023
EXTRACT: "Is Oppenheimer a movie for our time, reminding us of the tensions, dangers and conflicts of the old Cold War while a new one threatens to break out? The film certainly chimes with today’s big power conflicts (the US and China), renewed concern about nuclear weapons (Russia’s threats over Ukraine), and current ideological tensions between democratic and autocratic systems. But the Cold War did not just rest on the threat of the bomb. Behind the scientists and generals were many other players, among them the economists, who clashed just as vigorously in their views about how to run postwar economies."
Aug 5th 2023
EXTRACT: "I have a modest claim to make: we need Bruno today more than ever. This is because he represents an intellectual antidote to the prevailing ideology of today which tells us that we are doomed to finitude, which comes down politically to the assertion that there is no alternative to the reign of global capitalism. Of course, Bruno did not know about capitalism, globalization or neoliberalism. What he did know however is that humanity is infinite. That we are limited only by our own narrowness of vision."
Jul 26th 2023
EXTRACT: "We studied 55,000 people’s dietary data and linked what they ate or drank to five key measures: greenhouse gas emissions, land use, water use, water pollution and biodiversity loss. Our results are now published in Nature Food. We found that vegans have just 30% of the dietary environmental impact of high-meat eaters. The dietary data came from a major study into cancer and nutrition that has been tracking the same people (about 57,000 in total across the UK) for more than two decades."