by Allen Hornblum
Fifty years ago this July, newspaper headlines shocked the conscience of the nation with a disturbing story of racial bias and medical mistreatment in one of America’s most honored institutions. The alarming Associated Press story first appeared on July 25, 1972 in the Washington Star. The front page headline, “Syphilis Patients Died Untreated,” caught readers attention. They’d go on to read that the goal of a strange, non-therapeutic experiment conducted by the United States Public Health Service (USPHS) was not to treat the sick or save lives, but “determine from autopsies what the disease does to the human body.”
The next day every newspaper in the country covered the story. The New York Times front-page headline “Syphilis Victims in U.S. Study Went Untreated For 40 Years,” informed readers that hundreds of illiterate Black sharecroppers with syphilis in Alabama were denied treatment due to their participation in a scientific study. The alarming revelation not only provoked outrage and embarrassment, but caused Americans to look with a more discerning eye at what was occurring in the hospitals, orphanages, and prisons in their communities. It would also spark a long-overdue re-evaluation of the medical community’s cavalier practice of using vulnerable populations as raw material for experimentation.
How could such a thing happen in America people wanted to know, especially under the auspices of the government and scientific community? In the following days and months, academics, lawmakers, ethicists, and op-ed writers would ponder what the repugnant, four-decade long study of “Untreated Syphilis in the Negro Male” said about science, race, and the soul of America? Now, a half-century on and over two decades into the 21st century – and the 90th anniversary of the infamous Tuskegee Syphilis Study’s inception – we are still reflecting on those same questions.
Before it ran off the rails and become a monument to horrendous decision-making, the Tuskegee Syphilis Study was a well intended public health project in the late 1920s to combat the high incidence of syphilis among rural Blacks in the deep South. Six counties in six Southern states were targeted for “surveys” to gauge the depth and scope of the problem, and “demonstration projects” to treat those with the disease. The surveys disclosed alarming results, a third of the male population in several counties had syphilis. Macon County, Alabama, the home of Tuskegee Institute, was the worst.
Treatment for syphilis at the time, however, was primitive and not particularly effective. It consisted of a crude and often toxic mix of bismuth, mercury, and arsenic. Many patients – and a good many in the medical community – considered the treatment worse than the disease. The effort was only underway a short time when a significant problem emerged, as the economic depression worsened money for the program dried up. Treatment – as poor as it was – ceased. But a few at the PHS thought something valuable could still be obtained from the annual “round-ups” of sick men. New information, they argued, added to the scientific community’s bank of knowledge that was critical for medical advancement. Hence, the beginning of a new study in the fall of 1932 that would annually examine, but not treat 399 impoverished Black sharecroppers with syphilis. The men, all unschooled and impoverished, were told they had “bad blood” and were being treated for it.
Though Dr. Taliaferro Clark, head of the Venereal Disease Division of the USPHS, is usually identified as the originator of the study, an investigator recently researching the history of children as test subjects discovered documents showing that it may have been a colleague of Clark’s who actually was the creative spark behind the infamous study. Thomas Parran, a young Georgetown Medical School graduate who would go on to prove himself an innovative medical mind and adept administrator, was increasingly recognized for his talents. He would go on to break new ground in the fight against venereal disease, write influential books on the subject, and eventually be appointed Health Commissioner of New York and Surgeon General of the United States. However, during an earlier part of his career while working for the USPHS, he was sent to Denmark to learn how Scandinavian countries tackled public health problems.
Parran returned home with renewed appreciation for European medicine. He’d also express praise for a retrospective study of syphilis patients that occurred between 1890 and 1910.
Drs. Boeck and Bruusgaard, two Norwegian physicians at the University of Oslo, had come to believe the chemical elixirs proscribed to combat syphilis at the time were not only worthless, but in many cases detrimental to a patient’s health. Better to hospitalize those with syphilis symptoms, attend to their needs, but refrain from any harmful therapeutic measures. Both doctors believed their non-treatment approach had scientific merit. Dr. Parran was intrigued
Shortly after at a 1931 medical conference in Montreal, Parran presented a paper that called the Oslo non-treatment experiment an example of “masterful inaction.” And it was his obsession with that unusual Norwegian study – along with the lack of funding for a syphilis treatment program in Macon County – that caused Parran in January 1932 to suggest the Tuskegee vicinity as the perfect site for a similar American study. As he wrote at the time, “If one wished to study the natural history of syphilis in the Negro race uninfluenced by treatment, this county would be an ideal location for such a study.”
The upshot is that Clark and the USPHS would embrace Parran’s notion of a non-treatment study of Southern blacks in the Fall of 1932 and shepherd the experiment’s continuation for another four decades.
That such a questionable scientific study began was bad enough, that it continued so long and with so little opposition is even more perplexing. Incredibly, if it wasn’t for the moral backbone and uncommon persistence of one man, the study may have continued many years longer than it did. Peter Buxtun, a contact tracer for the Communicable Disease Center (known today as the Center for Disease Control) in the Castro District of San Francisco in the mid-1960s, had just sat down for lunch one day when he overheard colleagues discussing an unusual case. A physician was reprimanded by medical authorities for treating a man with syphilis.
“I thought it very bizarre,” said Buxtun, mystified that a doctor giving penicillin to a syphlitic patient would be berated for his actions. “I didn’t understand what they were doing? Why was this doctor being criticized for treating sick patients? It made no sense.”
Curious if the story was true, Buxtun decided to look into the matter. He contacted CDC offices in Atlanta. “I told them I’d like to know what was going on,” said Buxtun. Less than a week later, he received “a fat envelope filled with information about round-ups” involving hundreds of locals who had syphilis. They were all uneducated and impoverished Macon County, Alabama sharecroppers and tenant farmers. Most astonishing, the men weren’t being treated.
“I was aghast,” said Buxtun. “What the hell do they think they’re doing? I’m in San Francisco working hard to fight the spread of disease by tracking down those with syphilis and gonorrhea and getting them a shot of penicillin. And in Alabama they’re not treating people they know have venereal disease. I couldn’t understand it.”
Buxtun continued to pursue the matter. He asked questions, researched the history of human experimentation, and generally made a pest of himself. Everyone else either found the study in Tuskegee, Alabama acceptable or too frightened to speak up. “My boss said, if you make a big fuss, you’ll be fired,” Buxtun told me. “Colleagues said don’t get me involved.”
Despite the advice, the former Army psychiatric social worker couldn’t stomach what was either bureaucratic incompetence or outrageous medical mischief. He held fast to the quaint notion that apprising his CDC superiors of a grave miscarriage of research ethics would result in the syphilis study’s termination. His repeated letters and warnings of a disastrous outcome for all if the project continued resulted in Buxtun being summoned to headquarters for a dressing down. On his arrival at the CDC offices in Atlanta, he was “escorted to a downstairs meeting room and told to sit at the far end of a large conference table” opposite “several high-ranking CDC and PHS officials.” Their reproachful glares and dismissive comments were designed to demean and intimidate him.
“Now see here young man,” he was told by one of the division’s top operatives who read from various reports as if the data was worth the lives of hundreds of Black men. “We’re getting a lot of good information from this study.” They went on to harangue Buxtun for his presumptuousness, lack of medical education, and audacity in questioning their operations. “What rotten bastards they were,” was all he could think of as he walked out of the meeting.
But if medical experts and CDC officials thought they had heard the last of the lowly San Francisco contact tracer they were sorely mistaken. Buxtun was no Haight-Ashberry flower child, SDS radical, or social do-gooder. In fact, he was staunch Republican, GOP contributor, and 2nd Amendment advocate who possessed several dozen guns, and a valuable collection of African artwork and weaponry. As they would discover, Buxtun was made of sterner stuff and built for the battle. Every synapse in his brain told him people – and that included Alabama sharecroppers – should be considered more than autopsy material. Born to an Austrian-Catholic housewife and Jewish-Czech father just prior to Europe erupting in flames, the family escaped the coming holocaust, fled to America, and settled in Oregon. With an affection for the outdoors, a strong independent streak, and a keen ability to discern right from wrong, Buxtun saw the CDC’s exercise in Tuskegee as something of a medical horror that had to be brought to an end.
As the years passed, his vigorous opposition to the study was unrelenting. In one 1968 letter to upper level CDC authorities, he repeated his “grave moral doubts about the propriety of this study.” The test subjects he pointed out were, “100% negro.” That in itself was “political dynamite” and that “negroes have long been used for medical experimentations and teaching cases in emergency wards of county hospitals.” Moreover, the test population was “not composed of volunteers with social motives,” but are “largely uneducated, unsophisticated, and quite ignorant of the effects of untreated syphilis.” In conclusion, Buxtun argued that such a study today would be considered “morally unethical,” and “earnestly hoped that you will inform me that the study group had been, or soon will be treated.”
The National Communicable Disease Center proved equally intractable on the subject. After assembling a “committee of professionals,” they wrote back, and “an examination of the data and a very lengthy discussion regarding treatment, our committee of highly competent professionals did not agree nor recommend that the study group be treated.” Once again, Buxtun was thwarted, and the ever dwindling number of Tuskegee test subjects prevented from receiving penicillin, which had been proven in the mid-1940s the drug of choice for treating venereal disease.
When he shared his concerns with Edythe Lederer, a friend and young Associated Press reporter, in 1972 she was dubious. But after being shown documents of the study and his correspondence with CDC officials, she was appalled. Won over, she took the material to her editor who recognized a good story when he saw one. Another reporter, Jean Heller, was assigned to do the AP story, and its appearance in newspapers the last week of July 1972 set off a wave of public outrage and considerable embarrassment in the scientific community.
Suddenly human experimentation was being considered more seriously. And the practices of hospitals, orphanages, mental asylums and prisons hosting the experiments examined more skeptically. News articles illuminating questionable medical research at a host of institutions such as Sonoma State Hospital (California), the Ohio Soldiers and Sailors Orphans Home, Pennhurst School for the Feebleminded (Pennsylvania), the Vineland State Colony for the Feebleminded (New Jersey), and Willowbrook (New York) became more frequent. The public reaction was deafening. Under pressure, government officials told medical investigators to cease operations and get out. Something of a shot heard around the country, the Tuskegee revelations cast a bright light on the shadowy practice of using vulnerable populations such as mental asylum inmates, hospital patients, and orphans as cheap and available “research material.”
I witnessed this long and repugnant practice of using the powerless as experimental material while working in the Philadelphia Prison System in the early 1970s. Prior to Buxtun’s explosive revelations regarding Tuskegee, Dr. Albert M. Kligman, a renowned dermatologist at the University of Pennsylvania Medical School, had transformed the city jail into the country’s largest human research factory. Hundreds of inmates at any given time – and thousands over the years – were adorned with gauze pads and medical dressing for a wide array of clinical trials. Many experiments testing hair shampoo, detergent, and deodorant were rather innocuous while others incorporating dioxin, radioactive isotopes, and chemical warfare agents were highly dangerous. Inmates rarely if ever knew what they were being injected with, swallowing, or having slathered on them.
A vast gulag of opportunity for those proffering research protocols and the money to back them up, Kligman shrewdly recast Holmesburg Prison and the city’s two other jails into a bustling experimental supermarket. Pfizer, Smith-Kline, Johnson & Johnson, R.J. Reynolds, Dow Chemical, the U. S. Army, and many others all did business with Kligman. His unlimited access to inmate-test subjects – his “Acres of Skin” – combined with an entrepreneur’s eye for making money from medicine, made Kligman the busiest research physician in postwar America. And like the long-running experiment in the Alabama countryside, no one spoke up. No one raised a hand to question whether the medical studies occurring behind Holmesburg’s high walls – and in the nation’s third largest city – were safe and ethical?
It would be years before concepts like “informed consent” and “voluntary consent” were applied to research endeavors. Most postwar researchers claimed to know little regarding the Nuremberg Code, and its prohibition against using individuals who lacked “free power of choice” or under “constraint or coercion” as test subjects. Medical ethics was downplayed, if mentioned at all. The Nuremberg Code, they convinced themselves, applied only to Nazis. The upshot was the emergence of a free-wheeling, no holds-barred research atmosphere. As Dr. Kligman nostalgically said of the unfettered research milieu, “No one asked me what I was doing. It was a wonderful time.”
For Kligman, who felt comfortable using physically and mentally handicapped children as well as prisoners as research material – and the many USPHS physicians who denied Tuskegee Study participants adequate treatment – their scientific goals were paramount. The lives of test subjects, particularly those warehoused in underfunded institutions or strewn across a barren, rural landscape, were of little consequence. Research scientists in pursuit of grand achievements, found it disadvantageous to have their hands tied with myriad rules and assorted restrictions. Breaking new scientific ground was difficult enough without forcing them to view test subjects as individuals with their own interests and rights.
Breaching the few ethical guardrails that existed necessitated a form of moral amnesia or what Professor A. Bernard Ackerman referred to as a “conspiracy of silence” in order to protect the profession from “the perversion of principles that had taken place in the medical community.” No one, certainly no one of import, spoke up to challenge the profession’s standards and practices.
After the Tuskegee revelations, however, keen medical observers began to address the inhumanity of it all. The “relentless pursuit of science” argued Yale professor Jay Katz, led to an “objectification of patients,” and establishment of a culture of “medical authoritarianism.” Philosopher Hans Jonas further cautioned that although progress was important, “the erosion of moral values in pursuit of scientific progress, would make its most dazzling triumphs not worth having.”
A half-century ago, the sordid Tuskegee saga seared the conscience of the nation. The cavalier use of “throwaways” – America’s marginalized populations – as research material would no longer be acceptable. Our most vulnerable citizens now receive some degree of protection and scientific progress continues unimpeded. But that does not eliminate the need for constant vigilance for there will always be individuals and institutions willing to take ethical short-cuts to accomplish their goals.
Allen M. Hornblum is an author who has written on organized crime, Soviet espionage, medical ethics, and sports. He has written three books on the use of vulnerable populations in medical research including the recently re-published; Against Their Will: The Secret History of Medical Experimentation on Children in America (with Judith L. Newman & Gregory J. Dober).