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A question of informed consent —

50 years on, the lessons of the tuskegee syphilis study still reverberate, for 40 years, researchers deceived test subjects about the true purpose of the study..

Jennifer Ouellette - May 5, 2022 11:20 am UTC

This year marks the 50th anniversary of The New York Times' exposé of the infamous Tuskegee Syphilis Study,  thanks to a frustrated social worker who tipped off the press. By the time the story broke in 1972, experiments had been conducted on unsuspecting Black men in the area surrounding Tuskegee, Alabama, for 40 years. All 400 or so of the male subjects had contracted syphilis, and all had been told they were receiving treatment for the disease—except they were not.

The researchers in charge of the study instead deliberately withheld treatment in order to monitor the progression of the disease as it advanced unchecked. The study's exposure led to a public outcry and heated debate over informed consent, ultimately giving rise to a number of regulations to prevent such an ethical lapse in the future. The Tuskegee Syphilis Study has since become a vital case study in bioethics, but public awareness of its existence is spotty at best. A  new paper published in the American Journal of Respiratory and Critical Care Medicine seeks to remedy that, and it argues that federal regulation is not enough to prevent similar unethical research.

"Citizens have an obligation to remember the victims of any major catastrophe, as people do with 9/11," the paper's author, Martin Tobin, told Ars. "The men in Tuskegee suffered major injury, including death, at the hands of the premier health arm of the US government. A failure to remember what happened to these men is to add another layer of injury to what they already endured."

Tobin, a professor of medicine at the Hines Veteran Hospital and Loyola University of Chicago Stritch School of Medicine, wanted to ensure that the remembrance didn't get ignored in favor of another 50-year milestone this year—that of the Watergate scandal , which dominated national headlines in 1972 and ultimately led to the resignation of President Richard Nixon two years later. There have been a number of prior academic articles about the Tuskegee study penned by historians or ethicists. But over 45 years of practice, Tobin has conducted his share of research on patients, and he felt that experience gave him a unique vantage point.

Tobin is also a teacher who understands the power of a good story to convey fundamental principles. "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," said Tobin. "Everything that a medical investigator needs to know about research ethics is contained in the Tuskegee story—and it is more instructive than getting handouts about informed consent and abstract concepts."

The scourge of syphilis

Unlike many ethically questionable research projects, the Tuskegee study was notable because it wasn't done in secret. It had the full support of many prominent leaders in the medical profession. The idea originated in 1932 with Taliaferro Clark, then director of the Venereal Disease division of the Public Health Service (PHS), the precursor to today's Centers for Disease Control and Prevention (CDC). Clark read about a 1928 study with white men conducted in Oslo, Norway. He thought it would be a grand idea to conduct similar research using impoverished Black sharecroppers in Macon County, Alabama, many of whom had contracted the disease. At the time, syphilis was a significant health concern, and the effects of the disease were believed to depend on the patient's race.

Subjects were recruited with the help of a Black nurse named Eunice Rivers; her involvement was key to gaining the sharecroppers' trust. In exchange for their participation, subjects were promised free physical examinations, free transportation to and from the clinic, hot meals on those days, and free treatment for any minor ailments. Rivers was also able to convince many families to agree to an autopsy in exchange for funeral benefits—a major concern for the project's leaders. "If the colored population become aware that accepting free hospital care means a post-mortem, every darkey will leave Macon County," one of the doctors on the project wrote to a colleague.

However, the researchers lied to the men about their condition; they told them they were being treated for "bad blood" rather than syphilis. They also lied about the "treatments"; the men were given dummy pills, even after penicillin was found to be effective against syphilis and became widely available. And they lied about the need for painful lumbar punctures to check for neurosyphilis, telling the subjects they were therapeutic rather than purely diagnostic.

A couple of doctors did express concerns about the ethics of the study in 1955 and 1965, but their warnings were ignored. In December 1965, a Czech-born social worker named Peter Buxton joined what was by then the CDC to interview patients with venereal disease. He soon wrote to the CDC expressing "grave moral concerns" about the Tuskegee study. When the CDC invited him to a meeting in Atlanta to discuss the matter, Buxton was berated by CDC physician John Charles Cutler, who clearly "thought I was a lunatic." Undeterred, Buxton again wrote to the CDC in November 1968, and this time, the director, David Sencer, established a Blue Ribbon Panel the following February to discuss the ethical issues.

When the panel decided that the men should not be treated—they deemed the study too important to science—Buxton contacted the press. The Washington Star broke the story on July 25, 1972, and it landed on the front page of The New York Times the following day. The public outcry led an ad hoc advisory panel to investigate further, and the study was finally terminated in October 1972. By then, 28 of the subjects had died from syphilis, 100 had died from related complications, 40 of the subjects' wives had been infected, and 19 children had been born with congenital syphilis.

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The Lasting Fallout of the Tuskegee Syphilis Study

A recent paper provides evidence that the Tuskegee Syphilis Study reduced the life expectancy of African-American men.

A new paper provides evidence that the Tuskegee Syphilis Study reduced the life expectancy of African-American men —though the Tuskegee Syphilis Study ended decades ago. What was the Tuskegee Syphilis Study and why did it have lasting reverberations?

The now-infamous 1932 Tuskegee Syphilis Study  was conducted by the U.S. Public Health Service in Macon County, Alabama. During the experiment 600 impoverished black men were studied, 399 of whom had syphilis that went untreated although the health care practitioners knew of their illness. The men were never educated about syphilis, were never told of their status or treated, although treatments did exist; they were merely told they were being seen for “bad blood.” The men underwent painful procedures like spinal taps under the guise of “free healthcare,” and were “compensated” with meals and burial insurance. The intent of the study was never even to actually help the patients, but rather to examine the course of untreated dormant syphilis in black men.

Men in the study were not allowed to access other treatment services in the area. Not only did the syphilis harm the men, many of their wives and even some of their children contracted the disease. Despite the fact that codes like the Nuremberg Code of ethics was created during the Tuskegee study, and that by 1947 penicillin had become a standard, effective treatment for syphilis, the experiment continued. The study was initially intended to be six months but continued until 1972.  It did not provide as much insight on syphilis research as it did about racism in health research.

Decades after the Tuskegee Syphilis study health statistics continue to illustrate the lack of trust black Americans have for healthcare professionals. Looking at the context and history of the beliefs can help us make sense of the trends. In the 1990s a notable chunk of the African American community believed that the government created AIDS . A 1997 study illustrated cited 32.1% of the black women surveyed agreed with a statement that scientists were not trustworthy . This significantly deviates from the 4.1 % of white women in the study who agreed with the aforementioned statement. This was despite the fact that over 80% of women surveyed recognized the benefits of medical research for society. The newer findings  delve specifically into how this mistrust of the health profession has had negative impacts on black people’s health.

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While tenets of equity in healthcare research appear to be universal , there is a long history of disparity when it comes to the distribution and quality of healthcare amongst individual people. The Hippocratic oath  compels new doctors to make blanket commitments to ethics and accountability while serving humanity regardless of gender, race, religion, political affiliation, sexual orientation, nationality, or social standing . And yet this oath belies a legacy of racism in medicine.

Communities that have experienced such painful histories of being used as lab rats understandably may not be inclined to engage with healthcare providers. Beneficence and non-maleficence are cornerstones of health care provision, at least if you look at codes we like to think all healthcare providers adhere to. But fidelity was not upheld with Tuskegee and the ripple effect is evident today. Oaths do not guarantee an obligation to morality or veracity in healthcare, people do.

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Tuskegee Experiment: The Infamous Syphilis Study

By: Elizabeth Nix

Updated: June 13, 2023 | Original: May 16, 2017

The Tuskegee experiment began in 1932, at a time when there was no known cure for syphilis, a contagious venereal disease. After being recruited by the promise of free medical care, 600 African American men in Macon County, Alabama were enrolled in the project, which aimed to study the full progression of the disease.

The participants were primarily sharecroppers, and many had never before visited a doctor. Doctors from the U.S. Public Health Service (PHS), which was running the study, informed the participants—399 men with latent syphilis and a control group of 201 others who were free of the disease—they were being treated for bad blood, a term commonly used in the area at the time to refer to a variety of ailments.

The men were monitored by health workers but only given placebos such as aspirin and mineral supplements, despite the fact that penicillin became the recommended treatment for syphilis in 1947, some 15 years into the study. PHS researchers convinced local physicians in Macon County not to treat the participants, and instead, research was done at the Tuskegee Institute. (Now called Tuskegee University, the school was founded in 1881 with Booker T. Washington as its first teacher.)

In order to track the disease’s full progression, researchers provided no effective care as the men died, went blind or insane or experienced other severe health problems due to their untreated syphilis.

In the mid-1960s, a PHS venereal disease investigator in San Francisco named Peter Buxton found out about the Tuskegee study and expressed his concerns to his superiors that it was unethical. In response, PHS officials formed a committee to review the study but ultimately opted to continue it—with the goal of tracking the participants until all had died, autopsies were performed and the project data could be analyzed.

Buxton then leaked the story to a reporter friend, who passed it on to a fellow reporter, Jean Heller of the Associated Press. Heller broke the story in July 1972, prompting public outrage and forcing the study to finally shut down.

By that time, 28 participants had perished from syphilis, 100 more had passed away from related complications, at least 40 spouses had been diagnosed with it and the disease had been passed to 19 children at birth.

In 1973, Congress held hearings on the Tuskegee experiments, and the following year the study’s surviving participants, along with the heirs of those who died, received a $10 million out-of-court settlement. Additionally, new guidelines were issued to protect human subjects in U.S. government-funded research projects.

As a result of the Tuskegee experiment, many African Americans developed a lingering, deep mistrust of public health officials and vaccines. In part to foster racial healing, President Bill Clinton issued a 1997 apology, stating, “The United States government did something that was wrong—deeply, profoundly, morally wrong… It is not only in remembering that shameful past that we can make amends and repair our nation, but it is in remembering that past that we can build a better present and a better future.”

During his apology, Clinton announced plans for the establishment of Tuskegee University’s National Center for Bioethics in Research and Health Care .

The final study participant passed away in 2004.

Tuskegee wasn't the first unethical syphilis study. In 2010, then- President Barack Obama and other federal officials apologized for another U.S.-sponsored experiment, conducted decades earlier in Guatemala. In that study, from 1946 to 1948, nearly 700 men and women—prisoners, soldiers and mental patients—were intentionally infected with syphilis (hundreds more people were exposed to other sexually transmitted diseases as part of the study) without their knowledge or consent.

The purpose of the study was to determine whether penicillin could prevent, not just cure, syphilis infection. Some of those who became infected never received medical treatment. The results of the study, which took place with the cooperation of Guatemalan government officials, were never published. The American public health researcher in charge of the project, Dr. John Cutler, went on to become a lead researcher in the Tuskegee experiments.

Following Cutler’s death in 2003, historian Susan Reverby uncovered the records of the Guatemala experiments while doing research related to the Tuskegee study. She shared her findings with U.S. government officials in 2010. Soon afterward, Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius issued an apology for the STD study and President Obama called the Guatemalan president to apologize for the experiments.

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The legacy of the Tuskegee study

By Austin Frakt

In the United States, African American men have  the worst health outcomes  of any major demographic group. At age 45,  their life expectancy  is more than three years less than that of non-Hispanic Caucasian men and more than five years less than African American women. According to  a 2017 study published  in The Quarterly Journal of Economics, one-third and one-quarter, respectively, of these life expectancy gaps may be attributed to a single event in 1972 — the disclosure of the Tuskegee study.

From 1932 to 1972, the U.S. Public Health Service studied 600 hundred low-income, African American men in Tuskegee, Alabama. The study’s purported purpose was to better understand the natural course of syphilis, which two-thirds of the men had.

Deceived about the nature of the study, the syphilitic men were provided sham treatments and were discouraged from seeking additional medical care. Physicians leading the study even contacted other doctors in the area urging them not to treat study participants. For their participation, the men received hot meals and their families were compensated for their burial costs.

Under any circumstances, this now infamous study is plainly unethical, unjust, and in violation of common sense and decency. That it wasn’t even scientifically useful — the natural history of syphilis was already largely understood —  betrayed the study’s racist motivation , as conveyed by Allan Brandt.

The doctors who devised and directed the Tuskegee Study accepted the mainstream assumptions regarding blacks and venereal disease. The premise that blacks, promiscuous and lustful, would not seek or continue treatment, shaped the study. […] In retrospect the Tuskegee Study revealed more about the pathology of racism than it did about the pathology of syphilis.

The Associated Press broke the story of the study in 1972 and it was halted. But its damage did not end with the participating men and their families. Public health researchers have cited it as a source of distrust among African Americans of the medical establishment, challenging efforts to  slow the spread of HIV , contain  tuberculosis outbreaks , and  broaden preventive care .

Marcella Aslan and Marianne Wanamaker  conducted a quantitative study of the effect of the Tuskegee Study. They found that black men at least 10 years old in 1972 and living closer to Macon County (where Tuskegee is located) are more likely to mistrust the medical system.

Perhaps as a consequence of this distrust, black men living closer to Tuskegee study participants are less likely to receive medical care and die at younger ages. Aslan and Wanamaker estimated that the

decrease in the life expectancy of black men attributable to the Tuskegee revelation represents 35% of the racial gap in male life expectancy in 1980 and 25% of the gender gap in black life expectancy.

These are large effects. And these are from just one chapter in a long history of racial discrimination and race-based beliefs in medical care (and elsewhere) that  continue to this day .

Stanford University

Stanford Health Policy is a joint effort of the Freeman Spogli Institute for International Studies and the Stanford School of Medicine

The shameful legacy of Tuskegee syphilis study still impacts African-American men today

• Beth Duff-Brown

Herman Shaw was a 30-year-old cotton farmer in Tuskegee, Alabama, when he saw a flyer offering free medical care by the U.S. government.

This was back in 1932 and the Great Depression was bearing down hard on the already poor black farmers in the Deep South. Shaw jumped at what he said seemed like a godsend at the time.

“Every year they would give us a full examination and a free meal,” Shaw told The Baltimore Sun for a story in 1997. The men were also offered free burial insurance.

What Shaw would learn 40 years later was the U.S. Public Health Service was unwittingly testing him for syphilis, a little-understood sexually transmitted disease that was devastating black communities in rural Alabama.

What’s worse, even after Shaw tested positive for the disease — which can cause blindness, paralysis, heart failure, bone deformities and even death if left unchecked — he was never told, nor treated.

“The thing that disturbs me now is that they found a cure,” Shaw told the Baltimore Sun. “They found penicillin. And they never gave it to us. It vexed me awfully sadly.”

Shaw was one of the 600 African-American men chosen for the “Tuskegee Study of Untreated Syphilis in the Negro Male.” They were told they had “bad blood” and many underwent painful spinal taps. Of those 600 men, 399 had syphilis.

Even after the Centers for Disease Control in 1945 approved penicillin to treat the disease, the study that began in 1932 would continue until 1972 without the men being treated — all in the name of medical research.

Stanford sophomore Javarcia Ivory (biology, ’19), remembers hearing this medical horror story growing up in neighboring Mississippi. He vowed to become a doctor and help revive the lost trust in public health in the Deep South.

When Ivory learned about a Stanford-led research project in Oakland, one that would dig deeper into this legacy of mistrust stemming from Tuskegee, he jumped.

“As an African-American and someone who aspires to one day become a doctor, I just knew I had to get involved,” he said.

Researchers connect Tuskegee trials to lower life expectancy

“The (Tuskegee) study’s methods have become synonymous with exploitation and mistreatment by the medical community,” write Stanford Health Policy’s  Marcella Alsan  and her colleague  Marianne Wanamaker  at the University of Tennessee.

The two have found that the disclosure of the study in 1972 is correlated with increases in medical mistrust and mortality among African-American men. They published their findings in a  working paper  for the National Bureau of Economic Research last year.

Using publicly accessible data, the researchers estimated life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for about 35 percent of the 1980 life-expectancy gap between black and white men.

Alsan and Wanamaker used data on medical trust, migration and health utilization from the General Social Survey and the National Health Interview Survey, as well as morbidity and mortality data from the Centers for Disease Control and Prevention.

Their paper touched a nerve among some prominent African-Americans, some of whom praised the work as a model for understanding medical mistrust today.

“The story that Alsan and Wanamaker uncovered is even deeper than the direct effects of the Tuskegee Study,” wrote Vann R. Newkirk II in the Atlantic .

“Their research helps validate the anecdotal experiences of physicians, historians, and public health workers in black communities and gives new power to them,” Newkirk wrote. “These findings are also useful in framing health-care debates and discussions of health disparities today.”

Health disparities run deep

African-American men today have the worst health outcomes of all major ethnic, racial and demographic groups in the United States. Life expectancy for black men at age 45 is three years less than their white male peers, and five years less than for black women.

In the years following the disclosure of the Tuskegee trials, medical researchers have repeatedly pointed to the U.S. Public Health Service experiment as one reason African-Americans remain wary of mainstream medicine and health-care providers.

“Mistrust may function as a tax on the price you pay to see a doctor,” said Alsan.

To further test this hypothesis beyond their data research, Alsan launched a pilot project in Oakland this past summer to evaluate the willingness of black men to seek preventative medical screenings.

The Oakland Health Disparities Pilot Project partnered with Dr. Owen Garrick, president and COO of Bridge Clinical Research, an organization based in Oakland that helps clinical researchers find patients from targeted ethnic groups.

Alsan and Garrick worked alongside Stanford and UC Berkeley students, as well as recent EMT students from the Oakland community to help run the project.

“We believe that even if you remove all the obstacles: transportation, access to health care and insurance — if you don’t trust the provider, you won’t follow their advice,” said Garrick, a physician whose mission is to get more people of color involved in clinical trials.

“But if you can push through this issue of mistrust, then you really begin to reap the benefits of the wealth of our health-care system, and then take advantage of the things that we as Americans have been afforded,” he said.

Oakland barbers partnered with the researchers and the barbershops served as recruitment sites. Uber also donated rides to the clinic for screening services.

Some 200 men filled out a medical survey; of those, 60 then agreed to clinical care.

Chris Colter, a master barber and manager for Station 33 Barber Shop in downtown Oakland, was pleased to participate in the pilot.

“It feels good that we’re helping out the community and that we’re instrumental in helping black men with health issues,” said Colter.

The pilot results are encouraging, Alsan said, given the high number of those who took up the offer for medical screenings. The team is hoping to scale up the research if they secure additional funding.

Ivory spent his summer in the Oakland barbershops, urging patrons to fill out the surveys and get the free checkup.

“I was really surprised at how easily they opened up with me and how interested they were that I went to Stanford,” said Ivory, who intends to go to medical school and return to rural Mississippi to practice medicine.

African-American men have a 70 percent higher risk of developing heart failure than white men, prompting Ivory’s desire to become a cardiologist.

“Working in the barbershops really gave me an in-depth understanding of how important diversity and inclusion in medicine are for some American populations,” said Ivory. “Medical mistrust does not have to dissuade black men from seeking health care in contemporary America — but it does. And this has galvanized my passion for wanting to become a doctor.”

Berkeley graduate student Grant Graziani, three years into a PhD in economics with a focus on health policy, helped design and implement the Oakland study.

“One area that I think has gotten too little study is how race affects health outcomes,” said Graziani. “I think really zooming in on race and studying a diverse population pool is going to open up a new area of research with a lot of interesting policy implications. Ultimately we just want to help people have healthier lives.”

A Presidential Apology

Shaw was one of eight Tuskegee survivors invited to a White House ceremony in 1997, to meet President Bill Clinton, who formally apologized for one of the most macabre clinical trials in American history.

The last of the Tuskegee survivors, Ernest Hendon, died in 2004 at the age of 96.

“The wounds that were inflicted upon us cannot be undone,” Shaw said at the White House ceremony, after being helped to the podium by Clinton. “I’m saddened today to think of those who did not survive and whose families will forever live with the knowledge that their death and suffering was preventable.”

The valedictorian of his 1922 high school class had wanted to go to college to study engineering, but his father insisted he stay back to run the family farm. He died in 1999 at the age of 97.

Two years earlier, at the White House ceremony, Shaw still found it in his heart to say it was never too late to “restore faith and trust.”

“In order for America to reach its full potential, “Shaw said, “we must truly be one America — black, red, white together — trusting each other, caring for each other, and never allowing the kind of tragedy which has happened to us in the Tuskegee study to ever happen again."

How the Public Learned About the Infamous Tuskegee Syphilis Study

A s the fight over reforms to the American health-care system continues this week, Tuesday marks the 45th anniversary of a grim milestone in the history of health care in the U.S.

On July 25, 1972, the public learned that, over the course of the previous 40 years, a government medical experiment conducted in the Tuskegee, Ala., area had allowed hundreds of African-American men with syphilis to go untreated so that scientists could study the effects of the disease.

“Of about 600 Alabama black men who originally took part in the study, 200 or so were allowed to suffer the disease and its side effects without treatment, even after penicillin was discovered as a cure for syphilis,” the Associated Press reported , breaking the story. “[U.S. Public Health Service officials] contend that survivors of the experiment are now too old to treat for syphilis, but add that PHS doctors are giving the men thorough physical examinations every two years and are treating them for whatever other ailments and diseases they have developed.”

By the time the bombshell report came out, seven men involved had died of syphilis and more than 150 of heart failure that may or may not have been linked to syphilis. Seventy-four participants were still alive, but the government health officials who started the study had already retired. And, because of the study’s length and the way treatment options had evolved in the intervening years, it was hard to pin the blame on an individual — though easy to see that it was wrong, as TIME explained in the Aug. 7, 1972, issue:

At the time the test began, treatment for syphilis was uncertain at best, and involved a lifelong series of risky injections of such toxic substances as bismuth, arsenic and mercury. But in the years following World War II, the PHS’s test became a matter of medical morality. Penicillin had been found to be almost totally effective against syphilis, and by war’s end it had become generally available. But the PHS did not use the drug on those participating in the study unless the patients asked for it. Such a failure seems almost beyond belief, or human compassion. Recent reviews of 125 cases by the PHS’S Center for Disease Control in Atlanta found that half had syphilitic heart valve damage. Twenty-eight had died of cardiovascular or central nervous system problems that were complications of syphilis. The study’s findings on the effects of untreated syphilis have been reported periodically in medical journals for years. Last week’s shock came when an alert A.P. correspondent noticed and reported that the lack of treatment was intentional.

About three months later, the study was terminated, and the families of victims reached a $10 million settlement in 1974 (the terms of which are still being negotiated today by descendants). The last study participant passed away in 2004.

Tuskegee was chosen because it had the highest syphilis rate in the country at the time the study was started. As TIME made clear with a 1940 profile of government efforts to improve the health of African Americans, concern about that statistic had drawn the attention of the federal government and the national media. Surgeon General Thomas Parran boasted that in Macon County, Ala., where Tuskegee is located, the syphilis rate among the African-American population had been nearly 40% in 1929 but had shrunk to 10% by 1939. Serious efforts were being devoted to the cause, the story explained, though the magazine clearly missed the full story of what was going on:

In three years, experts predict, the disease will be wiped out. To root syphilis out of Macon County, the U. S. Public Health Service, the Rosenwald Fund and Booker T. Washington’s Tuskegee Institute all joined forces. Leader of the campaign is a white man, the county health officer, a former Georgia farm boy who drove a flivver through fields of mud, 36 miles a day to medical school. Last month, deep-eyed, sunburned Dr. Murray Smith began his tenth year in Macon County. “There’s not much in this job,” said he, “but the love and thanks of the people.” At first the Negroes used to gather in the gloomy courthouse in Tuskegee, while Dr. Smith in the judge’s chambers gave them tests and treatment. Later he set up weekly clinics in old churches or schoolhouses, deep in the parched cotton fields. Last fall the U. S. Public Health Service gave him a streamlined clinic truck. The truck, which has a laboratory with sink and sterilizer, a treatment nook with table and couch, is manned by two young Negro doctors and two nurses. Five days a week it rumbles over the red loam roads. At every crossroads it stops. At the toot of its horn, through the fields come men on muleback, women carrying infants, eager to be first, proud to have a blood test. Some young boys even sneak in to get a second or third test, and many come around to the truck long after they have been cured. One woman who had had six miscarriages got her syphilis cured by Dr. Smith with neoarsphenamine. Proudly she named her first plump baby Neo.

In the years following the disclosure, the Tuskegee study became a byword for the long and complicated history of medical research of African Americans without their consent. In 1997, President Bill Clinton apologized to eight of the survivors. “You did nothing wrong, but you were grievously wronged,” he said. “I apologize and I am sorry that this apology has been so long in coming.” As Clinton noted, African-American participation in medical research and organ donation remained low decades after the 1972 news broke, a fact that has often been attributed to post-Tuskegee wariness.

In 2016, a National Bureau of Economic Research paper argued that after the disclosure of the 1972 study, “life expectancy at age 45 for black men fell by up to 1.5 years in response to the disclosure, accounting for approximately 35% of the 1980 life expectancy gap between black and white men and 25% of the gap between black men and women.” However, many experts argue that the discrepancy has more to do with racial bias in the medical profession.

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A Generation of Bad Blood

New research suggests a strong link between the public revelation of the Tuskegee study and poor health outcomes for black men.

The Tuskegee study is perhaps the most enduring wound in American health science. Known officially as the Tuskegee Study of Untreated Syphilis in the Negro Male, the 40-year experiment run by the Public Health Service followed 600 rural black men in Alabama with syphilis over the course of their lives, with officials refusing to tell patients their diagnosis, refusing to treat them for the debilitating disease, and actively denying some of them treatment. Whistleblowers brought an end to the incredibly unethical study in 1972, finally prompting the development of what would become modern medical ethics. But the lives of those black men and many of their families were mostly ruined; many men died from complications of syphilis, and several of their wives and children contracted the disease.

Research has long suggested that the ill effects of the Tuskegee study extend beyond those men and their families to the greater whole of black culture. Black patients consistently express less trust in their physicians and the medical system than white patients, are more likely to believe medical conspiracies, and are much less likely to have common, positive experiences in health-care settings. These have all been connected to misgivings among black patients about Tuskegee and America’s long history of real medical exploitation of black people.

A new paper details the real health effects that the Tuskegee study had on black people. The work from Marcella Alsan at the Stanford Medical School and Marianne Wanamaker at the University of Tennessee provides evidence for a strong claim: that by 1980, the public revelation of the Tuskegee study in 1972 had reduced life expectancy among black men over 45 by more than a year.

The study provides causal evidence in a body of research that stretches back decades, and it is a major revelation. As New York magazine notes , the main conclusion of Alsan and Wanamaker’s work is that the Tuskegee study was responsible for over a third of the life-expectancy gap between older black and white men in 1980. But the conclusions extend beyond that and fit with a body of anecdotal evidence from physicians and patients. Disclosure of the Tuskegee study disrupted a slow convergence of black health outcomes with white health outcomes in the mid-20th century, accelerated an erosion of trust in doctors, and dampened health-seeking behavior and health-care utilization for black men. And it did so more for those who were more similar to the Tuskegee study’s unwitting participants and those who were closely connected to the community of Tuskegee.

For Alsan and Wanamaker, the study spoke to long-standing interests, but required some methodological innovations. “From the medical side I had been sort of acutely aware of the Tuskegee experiment,” Alsan told me. “It would come up among the medical staff and even occasionally with patients. So I think that was one of the seeds that made me think that this could potentially be important.” He connected with Wanamaker, who had been studying racial disparities in education and labor markets, and both became convinced that this nefarious study might have actual quantifiable effects that could be uncovered.

One of the important contributions of their paper is the methodology it uses. It draws mostly on publicly accessible data on medical trust from the General Social Survey, data on health utilization from the National Health Interview Survey, census measures of migration patterns, and data from the CDC on mortality and morbidity. The innovation lies in how Alsan and Wanamaker used those data. Using a triple-difference model, the year 1972 was treated as the “exposure” itself since there aren’t real measures of how the news of the study was disseminated. As Wanamaker said, “We knew that there should be a sharp difference in 1972 and we knew there should be a difference between black men and any other peer group.”

There were two problems though. Black men and white men are already starkly different in health utilization and outcomes, and Alsan and Wanamaker needed some piece of data that could identify the Tuskegee study itself as a factor in the divergence of those health outcomes. To accomplish this, they used distance from the epicenter of the Tuskegee study, demographic similarity to the Tuskegee study’s participants, and migration clusters to identify if something that happened in Tuskegee in 1972 could be implicated. What they found is almost too perfect: outcomes, trust, and life expectancy diminished with proximity to Macon County; men who were more similar to Tuskegee’s uneducated, poor, medically underserved population were more likely to suffer diminished outcomes; and migrants from Alabama in the wake of Tuskegee were very likely to carry with them these diminished outcomes.

These additional differences point to the singular significance of the Tuskegee study. Information was less ubiquitous in 1972 than it is today, and distance from Alabama could signal that formal and informal information networks and people emigrating out of Tuskegee played a role in spreading mistrust. People who saw themselves reflected in the Tuskegee study’s population paradoxically ended up suffering more. And the results hold up even in the health morass of the South, which is notorious for being pretty bad for black patients. “We don’t highlight this within the paper,” Alsan said, “but you actually can see distance effects within the South, even the Deep South.”

The story that Alsan and Wanamaker uncovered is even deeper than the direct effects of the Tuskegee study. It illustrates how black migrants fleeing the southern exploitation and racism that the Tuskegee study exemplified carried their experiences with them. Distance mitigated those effects, except in cities like Los Angeles and San Francisco, where clusters of Alabaman migrants lived and worked after the second Great Migration. By the picture painted here, the Tuskegee study was not a singular event that was reported and processed immediately, but a generational scarring that defined a decade of black history.

It is a shame, then, that it is difficult to envision work that expands the working paper’s quantitative conclusions much further. It’s just difficult to find relevant historical data, and Alsan and Wanamaker’s work already stretches the imagination and limits of analytic technique to make the most of existing data. But their research helps validate the anecdotal experiences of physicians, historians, and public-health workers in black communities, and gives new power to them. As Alsan states, “I’ve had individuals come up to me—at least one woman came up to me and she said that after Tuskegee, she was 8 at the time and didn’t realize it—and said that they stopped going to her regular pediatrician and drove an hour to get to a black doctor instead of a white doctor.”

These findings are also useful in framing health-care debates and discussions of health disparities today. While the researchers did not find similar effects for younger people, this is a model for understanding a level of medical mistrust that still exists in black communities today. Other violations of ethics or stigmatization of diseases may be causing similar mortality effects now. Also, this research is important for grounding policy on diversifying the health-care workforce and for ensuring forward-thinking consideration of medical ethics for marginalized people as the field enters the digital and genomic ages.

Still, a paper that has not yet been peer-reviewed or replicated has its limits, and works best as a spark for more research and a reminder of the country’s past. The two go hand in hand, and there is still much work to be done in understanding broadly how America’s racial history defines the present, and more narrowly how people actually engage with their own health. As Wanamaker told me: “I’m surprised everywhere I go about how many people––particularly white people—don’t know this story. One thing I hope is that by publishing the paper we will remind people or even inform them about something that is so important but has dropped out of cultural conversation.”

Interestingly, that awareness of the Tuskegee study is exactly what eroded trust and what Wanamaker and Aslan have identified as a contributor to health disparities in the first place. Black patients were forced to make the impossible choice between participating in a grossly unethical medical system and accessing necessary health services. But the 1972 disclosure made the system less abusive, and led to reforms such as the Belmont Report that established medical ethics and protections for disadvantaged people. The choice for black patients now is no longer impossible, and a clear-eyed discussion of the past can help make it easier.

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It’s been more than 40 years since the revelation of the Tuskegee syphilis study sent shockwaves across the country. The subsequent mistrust of the medical community among African-American men appears to have spread far beyond the Deep South, where the infamous public health project took place.

Go to the web site to view the video.

Stanford scholars and Bridge Clinical Research team up to uncover the causes of health disparities between white and black men. They were motivated by historical research on the role of Tuskegee shaping health behaviors.

Six hundred African-American men were chosen for the “Tuskegee Study of Untreated Syphilis in the Negro Male,” launched during the Great Depression. They were told they had “bad blood,” and many underwent painful spinal taps and other medical procedures. Of those 600 men, 399 had syphilis.

Even after the U.S. Public Health Service in 1945 approved penicillin to treat the disease, the study that began in 1932 would continue until 1972 without the men being treated – all in the name of medical research.

Stanford sophomore biology major Javarcia Ivory remembers hearing this medical horror story growing up in neighboring Mississippi. He vowed to become a doctor and help revive the lost trust in public health in the Deep South.

When Ivory learned about a Stanford-led research project in Oakland, CA—one that would dig deeper into this legacy of mistrust stemming from Tuskegee—he jumped.

“As an African-American and someone who aspires to one day become a doctor, I just knew I had to get involved,” he said.

Lower life expectancy

“The [Tuskegee] study’s methods have become synonymous with exploitation and mistreatment by the medical community,” write Stanford Health Policy’s Marcella Alsan and her colleague Marianne Wanamaker at the University of Tennessee.

The two have found that the disclosure of the study in 1972 is correlated with increases in medical mistrust and mortality among African-American men. They published their findings in a working paper for the National Bureau of Economic Research last year.

Using publicly accessible data, the researchers estimated life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for about 35 percent of the 1980 life-expectancy gap between black and white men.

Alsan and Wanamaker used data on medical trust, migration and health utilization from the General Social Survey and the National Health Interview Survey, as well as morbidity and mortality data from the Centers for Disease Control and Prevention.

Their paper touched a nerve among some prominent African-Americans, some of whom praised the work as a model for understanding medical mistrust today.

“The story that Alsan and Wanamaker uncovered is even deeper than the direct effects of the Tuskegee Study,” wrote Vann R. Newkirk II in The Atlantic .

“Their research helps validate the anecdotal experiences of physicians, historians and public health workers in black communities and gives new power to them,” Newkirk wrote. “These findings are also useful in framing health care debates and discussions of health disparities today.”

Health disparities run deep

African-American men today have the worst health outcomes of all major ethnic, racial and demographic groups in the United States. Life expectancy for black men at age 45 is three years less than their white male peers, and five years less than for black women.

In the years following the disclosure of the Tuskegee trials, medical researchers have repeatedly pointed to the U.S. Public Health Service experiment as one reason African-Americans remain wary of mainstream medicine and health care providers.

“Mistrust may function as a tax on the price you pay to see a doctor,” said Alsan.

To further test this hypothesis beyond their data research, Alsan launched a pilot project in Oakland this summer to evaluate the willingness of black men to seek preventive medical screenings.

Stanford sophomore Javarcia Ivory (left)  and Dr. Owen Garrick compare notes outside a clinic where volunteers receive medical checkups. Photo by Nicole Feldman.

The Oakland Health Disparities Pilot Project partnered with Owen Garrick, president and COO of Bridge Clinical Research, an organization based in Oakland that helps clinical researchers find patients from targeted ethnic groups.

Alsan and Garrick worked alongside students from Stanford and the University of California, Berkeley, as well as recent emergency medical technician students from the Oakland community to help run the project.

“We believe that even if you remove all the obstacles – transportation, access to health care and insurance – if you don’t trust the provider, you won’t follow their advice,” said Garrick, a physician whose mission is to get more people of color involved in clinical trials.

“But if you can push through this issue of mistrust, then you really begin to reap the benefits of the wealth of our health care system, and then take advantage of the things that we as Americans have been afforded,” he said.

Oakland barbers in predominantly black neighborhoods partnered with the researchers and the barbershops served as recruitment sites. Uber also donated rides to the clinic for screening services.

Some 200 men filled out a medical survey; of those, 60 then agreed to clinical care.

Chris Colter, a manager for Station 33 Barber Shop in downtown Oakland, was pleased to participate in the pilot.

“It feels good that we’re helping out the community and that we’re instrumental in helping black men with health issues,” said Colter.

The pilot results are encouraging, Alsan said, given the high number of those who took up the offer for medical screenings. The team is hoping to scale up the research if they secure additional funding.

Ivory spent his summer in the Oakland barbershops urging patrons to fill out the surveys and get the free checkup.

“I was really surprised at how easily they opened up with me and how interested they were that I went to Stanford,” said Ivory, who intends to go to medical school and return to rural Mississippi to practice medicine.

African-American men have a 70 percent higher risk of developing heart failure than white men, prompting Ivory’s desire to become a cardiologist.

“Working in the barbershops really gave me an in-depth understanding of how important diversity and inclusion in medicine are for some American populations,” said Ivory. “Medical mistrust does not have to dissuade black men from seeking health care in contemporary America – but it does. And this has galvanized my passion for wanting to become a doctor.”

A presidential apology

Herman Shaw was one of eight Tuskegee survivors invited to a White House ceremony in 1997, to meet President Bill Clinton, who formally apologized for one of the most macabre clinical trials in American history.

The last of the Tuskegee survivors, Ernest Hendon, died in 2004 at the age of 96.

“The wounds that were inflicted upon us cannot be undone,” Shaw said at the White House ceremony, after being helped to the podium by Clinton. “I’m saddened today to think of those who did not survive and whose families will forever live with the knowledge that their death and suffering was preventable.”

The valedictorian of his 1922 high school class had wanted to go to college to study engineering, but his father insisted he stay back to run the family farm. Shaw died in 1999 at the age of 97.

Two years earlier, at the White House ceremony, Shaw still found it in his heart to say it was never too late to “restore faith and trust.”

“In order for America to reach its full potential,” Shaw said, “we must truly be one America – black, red, white together – trusting each other, caring for each other and never allowing the kind of tragedy which has happened to us in the Tuskegee study to ever happen again.”

‘You Don’t Treat Dogs That Way’: Inside The Real-Life Horror Story Of The Tuskegee Experiment

From 1932 to 1972, the tuskegee syphilis study allowed hundreds of african american men to die — all in the name of "science.".

In the midst of the Great Depression, the U.S. government appeared to be giving away free healthcare to poor African American sharecroppers in Macon County, Alabama. There was a serious syphilis outbreak there at the time. And it seemed as though the government was helping to fight it.

However, it eventually came to light that the government doctors had simply allowed 600 Black men — many of whom had syphilis — to believe that they were getting free treatment for their “bad blood.”

In reality, the doctors weren’t giving them any treatment at all.

Instead, the purpose of the Tuskegee experiment was to observe untreated Black patients as syphilis ravaged their bodies — until they died.

The Beginnings Of The Tuskegee Experiment

National Archives/Wikimedia Commons Dr. Walter Edmondson taking a blood sample from an unidentified participant in the Tuskegee study. 1932.

The United States Public Health Service ran the Tuskegee experiment from 1932 to 1972. It was the brainchild of senior official Taliaferro Clark, but he hardly worked alone. Several high-ranking members of the Public Health Service were involved and the study’s progress was regularly reported to the government and given repeated stamps of approval.

Originally, the study’s directive was to observe the effects of untreated syphilis in African American men for six to eight months — followed by a treatment phase. But as the plans were being finalized, the Tuskegee experiment lost most of its funding. The challenges of the Great Depression caused one of the funding companies to back out of the project.

This meant the researchers could no longer afford to treat the patients. But instead of canceling the study, they adjusted it — in a barbaric way.

The study now had a new purpose: to see what happened to a Black man’s body if he didn’t get any treatment for syphilis at all.

Researchers thus observed the men who had syphilis until they died, offering them only placebos such as aspirin and supplements. And all the while, they lied to them about the true nature of their condition — to prevent them from seeking true medical care anywhere else.

How Doctors Deliberately Withheld Treatment From Vulnerable Patients

National Archives The Tuskegee syphilis study was one of the most unethical experiments performed in U.S. history.

When the Tuskegee experiment first began, doctors already knew how to treat syphilis using arsenic therapy. But the researchers deliberately withheld information about treatment. They told the patients that they were suffering from “bad blood” to keep them from learning about syphilis on their own.

The experiment was unquestionably illegal. By the 1940s, penicillin was a proven, effective treatment for syphilis. And laws requiring treatment for venereal diseases were introduced. But the researchers defied these laws.

In fact, Dr. Thomas Parran Jr., one of the study’s leads, wrote in his annual report that the study was “more significant now that a succession of rapid methods and schedules of therapy for syphilis has been introduced.”

In short, he maintained that the Tuskegee experiment was more important than ever precisely because so many cases of syphilis were getting cured. This, he argued, was their last chance to study how syphilis killed an untreated man. And so the heinous study continued — for decades.

Four Decades Of Agonizing Deaths During The Tuskegee Syphilis Study

National Archives By the time the experiment came to an end, only 74 of the test subjects had survived.

In all the years this reprehensible study was active, nobody stopped it. By the 1940s, physicians weren’t only neglecting to treat the men’s syphilis, they were also actively keeping them from finding out there was a cure.

“We know now, where we could only surmise before, that we have contributed to their ailments and shortened their lives,” Oliver Wenger , a director for the Public Health Services, wrote in a report.

But that didn’t mean he was going to stop the experiment. Instead, he said, “I think the least we can say is that we have a high moral obligation to those that have died to make this the best study possible.”

In 1969, 37 years into the study, a committee of Public Health Service officials gathered to review its progress. Of the five men in the committee, only one felt they should treat the patients. The other four ignored him.

Ethics weren’t a problem, the committee ruled, as long as they “established good liaison with the local medical society.” In other words, as long as everyone liked them, “there would be no need to answer criticism.”

The Doctors Who Allowed The Tuskegee Experiment To Happen

National Archives Eunice Rivers poses for a photograph with two doctors involved in the Tuskegee experiment.

It’s hard to imagine anyone wanting to be associated with such a horrific experiment, let alone anyone from the historically Black Tuskegee Institute and its staff of Black doctors and nurses. But their involvement is part of the sad story behind the Tuskegee syphilis study.

In fact, the patients’ main contact point was an African American nurse named Eunice Rivers. Her patients called the observation building “Mrs. Rivers’ Lodge” and regarded her as a trusted friend. She was the only staff member to stay with the experiment for the full 40 years.

Rivers was fully aware that her patients weren’t being treated for the disease ravaging their bodies. But as a young Black nurse given a major role in a government-funded project, she felt that she couldn’t turn it down.

“I was just interested. I mean I wanted to get into everything that I possibly could,” she recalled after the experiment ended.

Rivers even justified the study after it went public in 1972, telling an interviewer, “Syphilis had done its damage with most of the people.” She also mentioned that the research provided value, saying, “The study was proven that syphilis did not affect the Negro as it did the white man.”

How The Tuskegee Syphilis Study Was Revealed To The World

National Archives Nurse Eunice Rivers filling out paperwork in 1932. She later defended her role in the study.

It took 40 years for someone to break the silence and shut the study down. Peter Buxtun, a Public Health Service social worker, tried staging several protests within the department to stop the experiment. But when his superiors continued to ignore him, he finally called the press.

On July 25, 1972, The Washington Star ran Buxtun’s story and the next day it was on the cover of The New York Times .

Finally, it was revealed to America — and to the rest of the world — that the U.S. government had broken its own laws and experimented on its own citizens. And there was damning proof: Incriminating signatures from everyone in the Public Health Department were all over the documents.

Thus, the Tuskegee experiment finally came to an end.

Tragically, by then only 74 of the test subjects had survived. Approximately 40 of the patients’ wives had become infected, and 19 of the men had unknowingly fathered children born with congenital syphilis.

The Unapologetic Reaction From The Tuskegee Researchers

National Archives Doctors involved in the Tuskegee experiment with nurse Eunice Rivers.

Even after the truth came out, the Public Health Service didn’t apologize.

In fact, John R. Heller Jr. , the head of the Division of Venereal Diseases, publicly complained that the Tuskegee experiment was shut down too soon and should have gone on longer. “The longer the study,” he said, “the better the ultimate information we would derive.”

Meanwhile, Eunice Rivers insisted that none of her patients resented her for her part in the study. “They love Mrs. Rivers,” she said. “In all of this that has gone on, I have never heard anyone say anything that was bad about it.”

The Tuskegee Institute apparently agreed. In 1975, three years after the Tuskegee experiment became public knowledge, the institute presented Rivers with an Alumni Merit Award. “Your varied and outstanding contributions to the nursing profession,” they declared, “have reflected tremendous credit upon Tuskegee Institute.”

But the families of the patients certainly didn’t echo the support of Rivers — and they made sure their voices were heard. “It was one of the worst atrocities ever reaped on people by the government,” said Albert Julkes Jr., whose father died thanks to the study. “You don’t treat dogs that way.”

The Aftermath Of The Heinous Experiment

National Archives Some believe that the Tuskegee experiment damaged public trust in the U.S. healthcare system.

After news of the study came out, the American government introduced new laws to prevent another tragedy like this. These new laws required informed consent signatures, accurate communication of diagnosis, and detailed reporting of test results in every clinical study.

An Ethics Advisory Board was formed in the late 1970s to review ethical issues concerning biomedical research. And efforts to encourage the highest ethical standards in scientific research are ongoing to this day.

In 1997, the U.S. government formally apologized to the victims of the Tuskegee experiment. President Bill Clinton invited the last eight survivors and their families to the White House and apologized to them directly.

He told the five survivors that attended, “I am sorry that your federal government orchestrated a study so clearly racist. That can never be allowed to happen again… Your presence here shows us that you have chosen a better path than your government did so long ago.”

The legacy of the Tuskegee experiment is without question a horrific one. Decades later, this dark chapter in American history still looms large throughout the nation. This is especially true in Tuskegee, where this real-life horror story will never be forgotten.

After this look at the Tuskegee syphilis study, find out about the disturbing Stanford Prison Experiment . Then, read up on the horrifying medical experiments carried out by Japan’s Unit 731 during World War II.

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The Legacy of the Tuskegee Syphilis Study: Assessing its Impact on Willingness to Participate in Biomedical Studies

The phrase, legacy of the Tuskegee Syphilis Study , is sometimes used to denote the belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of the infamous study of syphilis in men run by the U.S. Public Health Service from 1932-72. This paper is the first to attempt to assess directly the accuracy of this belief within a multi-city, multi-racial, large-scale, detailed random survey. We administered the Tuskegee Legacy Project (TLP) Questionnaire to 826 Blacks and non-Hispanic White adults in three U.S. cities. While Blacks had higher levels of general awareness of the Tuskegee Syphilis Study, there was no association between either awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, either for Blacks or Whites observed in our survey. While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, it does not assess the broader question of whether and how historical events influence people's willingness to participate in research. Future studies should explore this.

There is widespread belief that the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee (1932-72) has had a negative effect on African-Americans' willingness to participate as research subjects in biomedical studies. 1 - 5 That study, long-recognized as unethical, committed abuses against 399 African-American sharecroppers in Macon Country, Alabama who were the subjects of a 40-year USPHS study of the effects of untreated syphilis in Black men. 6 , 7 While a considerable amount has been written about the long-lasting effects of the USPHS Syphilis Study at Tuskegee on the Black community, most of this work has been from the perspective of history, 8 - 15 ethics, 8 - 17 access to health care, 11 , 14 - 21 and law. 15 , 20

Given the federal government's 1994 directive for researchers to obtain study samples with diversity in race and gender, 22 surprisingly little research has directly examined whether any differential participation of Blacks or other minorities in biomedical studies compared with Whites could be attributed to the USPHS Syphilis Study at Tuskegee, 23 - 30 and only three of these studies used quantitative methods. 28 - 30 A 2006 literature review pointed out the research design limitations of these three published quantitative studies on this specific topic 31 (they had low response rates, 30 were limited in scope to a single city, 28 - 30 or used study questionnaires containing only a limited set of variables 28 - 30 ). Thus, while all three of these early exploratory studies concluded that awareness of the Tuskegee Syphilis Study did not affect willingness to participate in biomedical studies, they were limited in their scopes of inquiry as well as in their generalizability.

In our first paper from the Tuskegee Legacy Project data, we reported that, despite having greater fear of participation in research studies, Blacks were just as likely as Whites to self-report willingness to participate in biomedical research. 32 These initial findings were fully confirmed in our second major study on this same topic using the TLP Questionnaire in three different cities. 33 A third recent paper expanded our inquiry to address the impact of both the general awareness of the Tuskegee Syphilis Study and the 1997 Presidential Apology about the Tuskegee Syphilis Study on willingness to participate in biomedical studies; it reported that Blacks were 2-3 times more likely than Whites to be willing to participate in biomedical studies despite having heard of the Tuskegee Syphilis Study or the Presidential Apology. 34

This paper seeks to answer a related but different question: “Does awareness and/or detailed knowledge of the Tuskegee Syphilis Study influence one's willingness to participate in biomedical studies in 1999-2000?” Specifically, we examined whether either general awareness or detailed knowledge of the Tuskegee Syphilis Study influences willingness to participate in biomedical studies for Blacks and for Whites in different geographic areas.

The Tuskegee Legacy Project (TLP) Study administered the TLP Questionnaire via random-digit dial (RDD) telephone interviews to respondents aged 18 years and older in four U.S. cities: Tuskegee, Alabama; Birmingham, Alabama; Hartford, Connecticut; and San Antonio, Texas in 1999-2000. This report presents the findings for the Black and White respondents from the three cities that had a sufficient number of Black and White respondents to permit meaningful analysis for both racial groups (i.e., Tuskegee, Birmingham, and Hartford).

As this paper is a follow-up analysis to our first paper from our Tuskegee Legacy Project, we refer readers to the earlier work for a full description of the methods used in conducting the 1999-2000 4-City Tuskegee Legacy Project. 32 This study was approved by the IRBs of the University of Connecticut Health Center and New York University.

The TLP Questionnaire contains two validated scales, the Likelihood of Participation (LOP) Scale (which measured the willingness to participate) and the Guinea Pig Fear Factor (GPFF) Scale (which measured the fear or wariness about participation), both of which are described in detail in the earlier publication. 32 Scores for each scale ranged from 0-100, with the LOP Scale using 17 questions from the TLP Questionnaire to provide a nuanced measure of willingness to participate in biomedical studies, while the GPFF Scale uses 5 questions to determine the level of fear an individual has about participating in a biomedical study. Awareness of the Tuskegee Syphilis Study (TSS) was measured dichotomously (i.e., yes/no) according to participants' responses to two separate questions, spaced 7 questions apart, asking if they had “ever heard of the Tuskegee Syphilis Study.”

Additionally, the TLP Questionnaire contains a set of seven questions on detailed knowledge of the Tuskegee Syphilis Study (TSS) that were utilized to create the TSS Facts & Myths Quiz score, a Tuskegee Syphilis Study (TSS) knowledge quiz score (lowest = 0, highest = 7). For the calculation of the TSS Facts & Myths Quiz score, don't know/not sure responses were treated as missing values. The selection of the seven items emerged from discussions among the research team members based upon their familiarity with the Tuskegee Syphilis Study history and literature, with a guiding criterion that only well-established facts associated with the Tuskegee Syphilis Study were to be used, i.e., questions that had face vailidty. The items on the TSS Facts & Myths Quiz were reviewed by an NIH Study Section (as part of an overall grant protocol review process) which had no negative comments about either the inclusion of any one of the 7 items, or the claim that they constituted a reasonable measure of detailed knowledge about the Tuskegee Syphilis Study. Similarly, the entire TLP Questionnaire was pretested in face-to-face interviews in 3 small pilot studies, as well as in a final RDD pilot study of 200 subjects. It was never challenged by any of the over 300 subjects in these pre-test pilot studies.

Initial unadjusted bivariate analyses that examined frequency distributions were followed by multivariate general linear model ANCOVA analyses, and multiple linear regression analyses, for dichotomous or continuous dependent variables, respectively. The multivariate analysis tested an overall model of each dependent variable (LOP and GPFF) for the primary independent variable of interest (either awareness or detailed knowledge) with ethnicity, age, gender, education, and income as covariates at four strata: total sample, by city, by race, and by race-within-city. When significant factors were detected, additional analyses were conducted to assess the direction and the magnitude of the difference. If the significant factor had more than two levels, a post hoc test of the adjusted means with Tukey criterion was conducted to control for Type I error. All analyses were conducted using either SPSS v14.0 software 35 or SAS v9.0 software. 36

In this report, we present the TLP Questionnaire findings for the 826 adult Blacks and non-Hispanic Whites in three cities (Tuskegee, Alabama; Birmingham, Alabama; and Hartford, Connecticut) which had overall response rates of 65%, 70%, and 49%, respectively. The overall completion rate (number of completed interviews/number of initiated interviews) exceeded 90% in each city. Table 1 shows the age, sex, education, and income distribution of the 826 subjects by race for each of the three cities.

DEMOGRAPHIC CHARACTERISTICS BY RACE AND AWARENESS OF THE TUSKEGEE SYPHILIS STUDY (TSS) FOR TUSKEGEE, AL, BIRMINGHAM, AL AND HARTFORD, CT (N=826)

Note: Statistically significant findings (p,<.05) across cities, and for Blacks vs. Whites within each city:

within city finding : Whites had higher educational levels in Hartford and in Birmingham than Blacks.

within city finding : Whites had higher incomes than Blacks in each city.

within city finding : A higher percentage of Blacks were aware of the TSS in Hartford and in Birmingham.

In addition, Table 1 shows the proportion of Blacks and Whites, by city, who had “ever heard of the Tuskegee Syphilis Study.” Awareness of the TSS ranged from a high of 93.3% for Blacks in Tuskegee to a low of 41.9% for Whites in Hartford. Across cities differences in the proportion of respondents who had ever heard of the TSS were statistically significant (89.9% vs. 70.9% vs. 49.0%, in Tuskegee, Birmingham, and Hartford, respectively; p<.05). Additionally, within city analyses by race revealed that a statistically significant (p<.05) higher percentage of Blacks than of Whites, had heard of the TSS in Birmingham (77.7% for Blacks vs. 64.0% for Whites) and Hartford (62.5% for Blacks vs. 41.6% for Whites), but not in Tuskegee (93.3% for Blacks vs. 87.8% for Whites).

The TSS Facts & Myth Quiz was administered to the 68.4% of subjects (n5565) who indicated that they had heard of the TSS. Figure 1 illustrates, by race within each city, the proportion of these 565 respondents who answered true to each of the 7 items on the Tuskegee Syphilis Study (TSS) Facts & Myth Quiz, having given a valid response (i.e., either true or false ). All don't know/not sure responses for this analysis were treated as missing data; typically, across the 7 questions, the don't know/not sure responses constituted about 20% of the responses, with a low of 15% up to a high of 55%. In Figure 1 , true statements are indicated in capital letters along the abscissa axis and any observed statistically significant differences by race within city are marked with asterisks. There was great variation across the 7 items by race within each city, with answers of true ranging from a high of 85% for the statement that subjects “were injected with syphilis” (a false statement) to a low of 2% for the statement that the study was “run by U.S. government doctors” (a true statement). For the former statement (i.e., subjects were injected with syphilis) the findings were that more Blacks than Whites thought it was true, and these differences were statistically significant (p<.05) for both Tuskegee and Hartford, and approached statistical significance (p=.068) in Birmingham.

The percentage of respondents who answered `true' to the 7 items on the Tuskegee Syphilis Study (TSS) Facts & Myth Quiz by race within city among those who had heard of the TSS (n=565).

Note: Capital letters indicate a TRUE statement.

*Statistically significant between Blacks vs. Whites within city at p<,.05.

Figure 2 reinforces the finding illustrated in Figure 1 concerning the relatively high frequency of incorrect answers on the details of the TSS for the TSS Facts & Myths Quiz. As Figure 2 shows, of a maximum 7 potential correct answers, neither Blacks nor Whites in any of the 3 cities achieved a mean TSS Facts & Myths score greater than 2, and no statistically significant racial differences were observed (mean scores ± standard deviations for Blacks = 1.6±1.4, and for Whites 1.7±1.3). For the TSS Facts & Myth Quiz, 90% of the 565 respondents who had heard of the TSS had a detailed knowledge score of 3 or less, with the top scores achieved being 5 and 6 for Blacks and Whites, respectively.

Mean scores* on TSS Facts & Myths Quiz by race within city for the 565 respondents who had heard of the Tuskegee Syphilis Study.

Note: none of the Black vs. Whites contrasts for either quiz score within city are statistically significant.

*(Mean # of correct answers).

Table 2 shows the findings from the multivariate analyses that were conducted to determine the impact of both awareness and detailed knowledge of the Tuskegee Syphilis Study on two dependent variables: 1) the willingness to participate (as measured by the LOP Scale), and 2) the degree of fear of participation (as measured by the GPFF Scale). Awareness of the Tuskegee Syphilis Study did not have a statistically significant relationship with either the willingness to participate (as measured by the LOP Scale, p50.71) or the fear of participation (as measured by the GPFF Scale, p=0.53) when adjusted for race, age, sex, education, and income for the sample of 826 respondents taken as a whole, or for Whites when analyzed separately. However, an ANCOVA analysis by race of the relationship between awareness and GPFF in Blacks was statistically significant (p=0.02), with Blacks who were aware of the TSS having a higher mean GPFF score than Blacks who were not aware of the TSS (65.1 vs 57.3, p=.02). For the other ANCOVA analyses related to awareness by city and by race-within-city, no consistent pattern of significant findings was observed.

SUMMARY OF ADJUSTED MULTIVARIATE ANALYSES a FINDINGS ON RELATIONSHIP BETWEEN AWARENESS AND DETAILED KNOWLEDGE OF THE TUSKEGEE SYPHILIS STUDY ON LIKELIHOOD OF PARTICIPATION (LOP) SCALE AND GUINEA PIG FEAR FACTOR (GPFF) SCALE FOR ALL SUBJECTS, WITHIN EACH CITY, AND WITHIN EACH CITY BY RACE

Table 2 also shows similarly adjusted ANCOVA analyses on the relationship between detailed knowledge of the TSS and the LOP and GPFF Scales. These analyses were conducted only for that subset of 565 respondents who indicated that they had heard of the TSS. The results were that detailed knowledge of the TSS, as measured by the mean Facts & Myth Quiz score, had no statistically significant relationship with either the LOP or GPFF Scale for Blacks or for Whites. However, a weak, albeit statistically significant inverse relationship was observed between the detailed knowledge and the GPFF Scale (p=0.04) for all subjects combined.

The Tuskegee Legacy Project (TLP) had its origins in a 1994 bioethics conference held at the University of Virginia entitled The Tuskegee Legacy: Doing Bad in the Name of Good . 37 All the speakers at that conference discussed consequences of the Tuskegee Syphilis Study, especially the possibility that African Americans were more reluctant to participate in biomedical research because of the abuse they suffered in that infamous study. However, often speakers appeared to assume that the central hypothesis was true, i.e., that African Americans were, in fact, more reluctant to participate in biomedical studies and that the Tuskegee Syphilis Study was at the heart of this reluctance to become a research subject. To date, most notions regarding this purported consequence of the Tuskegee Syphilis Study have been based on anecdote and, speculation, rather than on systematic empirical research. 5 , 9 , 11 , 20 , 23 - 26 , 29 , 30 , 37

Our findings reveal a clear gradient across the three cities on the percentage of respondents who had ever heard of the Tuskegee Syphilis Study: nearly 90% having heard of the TSS in Tuskegee, the historical epicenter of the TSS; just over 70% in Birmingham, the nearest big city to Tuskegee with a university medical center that would conduct clinical studies; and just under 50% in Hartford, a distant city in a different region of the U.S. with a university medical center that would conduct clinical studies and with a demographic profile similar to Birmingham's. Our findings also showed that a lack of knowledge about the details of the TSS was fairly common among both Blacks and Whites (i.e., 90% of respondents gave factually correct answers on 3 or fewer of the 7 tested items).

The answer to our first central research question, “Did awareness of the Tuskegee Syphilis Study influence one's willingness to participate in biomedical studies in 1999-2000?” was a straightforward No , for both Blacks and for Whites. Our adjusted multilvariate analyses revealed no statistically significant relationships between awareness of the TSS and either the LOP or the GPFF Scales.

However, the findings within the city of Tuskegee differed from the findings in the cities of Birmingham and Hartford. A significant relationship was observed among Blacks between awareness of the TSS and willingness to participate, but only in the small city of Tuskegee, the epicenter of this infamous event.

The answer to our second central research question in this report, namely, “Among those who had heard of the Tuskegee Syphilis Study, did detailed knowledge of the Tuskegee Syphilis Study influence one's willingness to participate in biomedical studies in 1999-2000?” is also a straightforward No for Blacks and for Whites, when analyzed either together as a whole sample or separately. However, the data on fear of participation, as measured by the GPFF Scale for the sample as a whole (i.e., Blacks and Whites together), revealed a statistically significant but weak inverse relationship between GPFF and detailed knowledge for the study sample as a whole (but this finding did not hold for Blacks or for Whites when analyzed separately). This observation for the study sample as a whole regarding detailed knowledge may well be a spurious finding as the direction of the relationship is opposite to what one might anticipate, and thus may be an artifact simply of the large number (n=548) of statistical tests conducted for the analyses shown in Table 2 .

Our findings of an overall lack of detailed knowledge about the Tuskegee Syphilis Study within both Blacks and Whites (as evidence by the low scores on the TSS Facts & Myth Quiz), echo the findings of two previous reports. 18 , 30

While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, one limitation of this study was that it did not assess the broader question of whether and how historical events influence people's willingness to participate in research. It would be perfectly consistent with our results if the TSS had more diffuse effects on people's willingness to participate in biomedical research (e.g., a general distrust of biomedical research might be passed on after the TSS became known without any details about the particular study having been retained). Future studies should explore this possible diffusion effect to determine if it exists, and if so, how the diffusion occurs, both within individuals and within communities.

A further limitation of this study was the post-data collection realization that the wording of one of the seven facts in the TSS Facts & Myths Quiz was not historically precise. Specifically, the fact would be more precisely worded as “The study ended once penicillin became widely available as a treatment for syphilis.”

The reality that this was the first use of the TSS Facts & Myths Quiz as a measure of detailed knowledge of the TSS is yet another inherent limitation of this study. Future studies should investigate the reliability, as well as the validity, of our 7 items as a consistent and accurate measure of detailed knowledge of the TSS. Finally, space limitations prevent us from giving detailed presentation of these findings for males and for females separately, given that a previous investigation reported gender differences in awareness about the Tuskegee Syphilis Study for Whites (more males aware than females, 54% vs 38% respectively), but not for Blacks (males at 53%, female at 54%). 29

The data from this follow-up analysis based upon the 1999-2000 4-City Tuskegee Legacy Project Study fail to show that being aware of the Tuskegee Syphilis Study directly affects one's willingness to participate in biomedical studies for either Blacks or for Whites, across the three cities, nearly three decades after the ending of the Tuskegee Syphilis Study. The only statistically significant finding was that in the city of Tuskegee, the historical epicenter of the index event, Blacks who had heard of the Tuskegee Syphilis Study indicated that they were willing to participate less often than Blacks who had not heard of the Tuskegee Syphilis Study. Additionally, while our previous publications revealed that Blacks were significantly more likely than Whites to have greater fear of participating (as measured by the GPFF Scale), 32 , 33 the data from the current report based on the same study population showed no relationship between detailed knowledge of the Tuskegee Syphilis Study and the fear of participation for either Blacks or Whites.

While there have been many discussions in the published literature, popular media, and in the community regarding the impact of the USPHS Syphilis Study at Tuskegee on the African American community, 8 - 21 , 23 - 34 , 37 it is critically important that we have a true scientific understanding of its impact on minority participation in biomedical research studies. If the Tuskegee Syphilis Study is, indeed, the reason for poor participation by minorities in biomedical studies, 23 - 27 , 30 then researchers ought to develop subject recruitment strategies for future studies that would target this issue. On the other hand, if the Tuskegee Syphilis Study it is neither the sole nor primary reason—nor after three decades even a distinctly identifiable reason—for poor levels of participation, then other strategies for are called for to ensure minority enrollment in biomedical studies.

Box 1. THE 7 ITEMS ON DETAILED KNOWLEDGE OF THE TUSKEGEE SYPHILIS STUDY (TSS) THAT CONSTITUTED THE QUESTIONS TALLIED TO CREATE THE TSS FACTS & MYTH QUIZ SCORE

The following was asked of subjects who had already indicated that they had heard of the Tuskegee Syphilis Study.

Introduction

I would like to know what specific facts you remember about the Tuskegee Syphilis Study. Would you tell me whether the following statements are True or False. If you don't know, please tell me that.

50 Years Ago, the Tuskegee Syphilis Study Was Exposed. How a Reporter Broke the Story

On july 25, 1972, jean heller, a then 29-year-old investigative reporter at the associated press shocked the world with a story of what is now known as the “tuskegee study”, by allen g. breed • published july 25, 2022 • updated on july 25, 2022 at 11:16 am.

Jean Heller was toiling away on the floor of the Miami Beach Convention Center when an Associated Press colleague from the opposite end of the country walked into her workspace behind the event stage and handed her a thin manila envelope.

“I’m not an investigative reporter,” Edith Lederer told the 29-year-old Heller as competitors typed away beyond the thick grey hangings separating news outlets covering the 1972 Democratic National Convention. “But I think there might be something here.”

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Inside were documents telling a tale that, even today, staggers the imagination: For four decades, the U.S. government had denied hundreds of poor, Black men treatment for syphilis so researchers could study its ravages on the human body.

The U.S. Public Health Service called it “The Tuskegee Study of Untreated Syphilis in the Negro Male.” The world would soon come to know it simply as the “Tuskegee Study” — one of the biggest medical scandals in U.S. history, an atrocity that continues to fuel mistrust of government and health care among Black Americans.

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“I thought, 'It couldn’t be,’” Heller recalls of that moment, 50 years ago. “The ghastliness of this.”

A Manila Envelope

The story of how the study came to light began four years earlier, at a party in San Francisco.

Lederer was working at the AP bureau there in 1968 when she met Peter Buxtun. Three years earlier, while pursuing graduate work in history, Buxtun had taken a job at the local Public Health Service office in 1965; he was tasked with tracking venereal disease cases in the Bay Area.

In 1966, Buxtun had overheard colleagues talking about a syphilis study going on in Alabama. He called the Communicable Disease Center, now the Centers for Disease Control and Prevention, and asked if they had any documents they could share. He received a manila envelope containing 10 reports, he told The American Scholar magazine in a story published in 2017.

He knew immediately that the study was unethical, he said, and sent reports to his superiors telling them so, twice. The reply was essentially: Tend to your own work and forget about Tuskegee.

He eventually left the agency, but he couldn’t leave Tuskegee.

So, Buxtun turned to his journalist friend, “Edie,” who demurred.

“I knew that I could not do this,” Lederer said during a recent interview. “AP, in 1972, was not going to put a young reporter from San Francisco on a plane to Tuskegee, Alabama, to go and do an investigative story.”

But she told Buxtun she knew someone who could.

At the time, Heller was the only woman on the AP’s fledgling Special Assignment Team, a rarity in the industry. Still, she was not spared the casual sexism of the era. A 1968 story on the team for AP World, the wire service’s employee newsletter, described the squad as “10 men and one cute gal.”

A caption under the 5-foot-2 Heller’s photo called the “pixie-like” reporter “lovely and competent.”

Lederer knew Heller from their days together at AP's New York headquarters, then at 50 Rockefeller Plaza, where Heller started out on the radio desk.

“I knew she was a terrific reporter,” Lederer says.

During a trip to visit her parents in Florida, Lederer made a short detour to Miami Beach, where Heller was part of a team covering the convention — from which U.S. Sens. George McGovern of South Dakota and Thomas Eagleton of Missouri would emerge as the Democratic presidential and vice presidential nominees.

During a recent interview at her North Carolina home, Heller recalled putting the leaked PHS documents in her briefcase. She says she didn’t get around to reading the contents until the flight back to Washington.

Seated next to her was Ray Stephens, head of the investigative team. She showed him the documents. Stephens realized the government wasn’t denying the study’s existence, just refusing to talk about it.

Heller recalls Stephens saying: “When we get back to Washington, I want you to drop everything else you’re doing and focus on this.”

The government stonewalled her and refused to talk about the study. So, Heller began making the rounds elsewhere, starting with colleges, universities and medical schools.

She even reached out to her mother’s gynecologist, a “straight down the line, middle of the road, superior doctor.”

“I asked him if he’d ever heard about this, and he said, ‘That’s not going on. I just don’t believe it.’”

Finally, one of her sources recalled seeing something about the syphilis study in a small medical publication. She headed to the D.C. public library.

“I asked them if they had any kind of documents, books, magazines, whatever ... that would fit a, what today we would call a profile or a search engine search, for ‘Tuskegee,’ ‘farmers’, ‘Public Health Service,’ ‘syphilis,’” Heller says.

They found an obscure medical journal — Heller can’t recall the title — that had been chronicling the study’s “progress.”

“Every couple of years, they would write something about it,” she says. “Mostly it was about the findings — none of the morality was ever questioned.”

Normally, reporters celebrate these “Eureka” moments. But Heller felt no such elation.

“I knew that people had died, and I was about to tell the world who they were and what they had,” she says, her voice dropping. “And finding any joy in that ... would have been unseemly.”

Armed with the journal, Heller went back to the PHS. They caved.

She says the lede of the story — the first paragraph or sentence of a news article — came to her quickly.

“Marv Arrowsmith, the bureau chief, walked by my desk and, I said, ‘Hey, Marv. Will you publish this?’” she recalls. “And he read it and he looked at me and he said, ‘Can you prove it?’ I said, ‘Yes.’ He said, ‘You got it.‘”

An AP medical writer helped interview doctors for the story. Within just a few short weeks, the team felt they had enough to publish.

Arrowsmith suggested they offer the story first to the now-defunct Washington Star, if it promised to run it on the front page.

“The Star was a highly respected PM (afternoon) newspaper, and if they took it seriously, others might follow,” Heller says.

AP Exposes Tuskegee Syphilis Study

The story ran on July 25, 1972, a Tuesday. It was a harrowing tale.

Starting in 1932, the Public Health Service — working with the famed Tuskegee Institute — began recruiting Black men in Macon County, Alabama. Researchers told them they were to be treated for “bad blood,” a catch-all term used to describe several ailments, including anemia, fatigue and syphilis. Treatment at the time consisted primarily of doses of arsenic and mercury.

In exchange for their participation, the men would get free medical exams, free meals and burial insurance — provided the government was allowed to perform an autopsy.

Eventually, more than 600 men were enrolled. What they were not told was that about a third would receive no treatment at all — even after penicillin became available in the 1940s.

By the time Heller’s story was published, at least seven of the men in the study had died as a direct result of the affliction, and another 154 from heart disease.

“As much injustice as there was for Black Americans back in 1932, when the study began, I could not BELIEVE that an agency of the federal government, as much of a mistake as it was initially, could let this continue for 40 years,” says Heller. “It just made me furious.”

Nearly four months after the story ran, the study was halted.

The government established the Tuskegee Health Benefit Program to begin treating the men, eventually expanding it to the participants’ wives, widows and children. A class-action lawsuit filed in 1973 resulted in a $10 million settlement.

The last participant died in 2004, but the study still casts a long shadow over the nation. Many African Americans cited Tuskegee in refusing to seek medical treatment or participate in clinical trials. It was even cited more recently as a reason not to get the COVID-19 vaccine.

At 79, Heller is still haunted by her story and the effects it had on the men and women of rural Alabama, and the nation as a whole.

For the story, Heller would win some of journalism’s highest honors — the Robert F. Kennedy, George Polk and Raymond Clapper Memorial awards. (Carl Bernstein and Bob Woodward of The Washington Post, writing about the Watergate scandal, finished in second place for the Clapper Award.)

Hanging in her office is a copy of the front-page byline she got in The New York Times, exceedingly rare for an AP staffer. But the hype surrounding Tuskegee would play a big role in Heller’s decision to leave the AP in 1974.

“I felt after all of the brouhaha over ... Tuskegee, and what came after it, that I should move on,” she says. She went on to a three-decade career that would take her from the hills of Wyoming to the beaches of South Florida.

These days, Heller spends her time cranking out fiction. She’s five books into a mystery series featuring Deuce Mora, a hard-driving female reporter who is a very un-pixie-like 6 feet tall.

Despite her distress over the state of the news business, she has never thought about returning to journalism.

“You can’t go home again; I firmly believe that,” she says. “And I don’t want to be competing against myself or against expectations.”

When asked if she regretted giving up what is arguably one of the great scoops in American journalism, Lederer replied: “Possibly, you know, a little bit.” But she knew the story was bigger than her or Heller or any individual reporter.

“What I cared about most was that this seemed to be a horrible and deadly injustice to innocent Black men,” says Lederer, who was the first woman assigned full time to cover the Vietnam War for the AP and remains its chief U.N. correspondent.

“And for me, the important thing was to verify it and to see that it got out to the broader American public — and that something was done to prevent any such experiments from happening again.”

Heller agrees.

“The story isn’t about me anyway,” she says. “It’s about them.”

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A fund apologizes for its role in the Tuskegee syphilis study that targeted Black men

The Associated Press

People attend a ceremony near Tuskegee, Ala., in 2017, to commemorate the roughly 600 men who were subjects in the Tuskegee syphilis study. Jay Reeves/AP hide caption

People attend a ceremony near Tuskegee, Ala., in 2017, to commemorate the roughly 600 men who were subjects in the Tuskegee syphilis study.

BIRMINGHAM, Ala. — For almost 40 years starting in the 1930s, as government researchers purposely let hundreds of Black men die of syphilis in Alabama so they could study the disease, a foundation in New York covered funeral expenses for the deceased. The payments were vital to survivors of the victims in a time and place ravaged by poverty and racism.

Altruistic as they might sound, the checks — $100 at most — were no simple act of charity: They were part of an almost unimaginable scheme. To get the money, widows or other loved ones had to consent to letting doctors slice open the bodies of the dead men for autopsies that would detail the ravages of a disease the victims were told was "bad blood."

Shots - Health News

Stop blaming tuskegee, critics say. it's not an 'excuse' for current medical racism.

Fifty years after the infamous Tuskegee syphilis study was revealed to the public and halted, the organization that made those funeral payments, the Milbank Memorial Fund, publicly apologized Saturday to descendants of the study's victims. The move is rooted in America's racial reckoning after George Floyd's murder by police in 2020.

"It was wrong. We are ashamed of our role. We are deeply sorry," said the president of the fund, Christopher F. Koller.

President Clinton and Vice President Al Gore, back, help Herman Shaw, a victim of the Tuskegee syphilis study, during a news conference in 1997. Doug Mills/AP hide caption

President Clinton and Vice President Al Gore, back, help Herman Shaw, a victim of the Tuskegee syphilis study, during a news conference in 1997.

The apology and an accompanying monetary donation to a descendants' group, the Voices for Our Fathers Legacy Foundation , were presented during a ceremony in Tuskegee at a gathering of children and other relatives of men who were part of the study.

The fund declines to try to justify what it did in the 1930s

Endowed in 1905 by Elizabeth Milbank Anderson, part of a wealthy and well-connected New York family, the fund was one of the nation's first private foundations. The nonprofit philanthropy had some $90 million in assets in 2019, according to tax records, and an office on Madison Avenue in Manhattan. With an early focus on child welfare and public health, today it concentrates on health policy at the state level.

Koller said there's no easy way to explain how its leaders in the 1930s decided to make the payments, or to justify what happened. Generations later, some Black people in the United States still fear government health care because of what's called the "Tuskegee effect."

"The upshot of this was real harm," Koller told The Associated Press in an interview before the apology ceremony. "It was one more example of ways that men in the study were deceived. And we are dealing as individuals, as a region, as a country, with the impact of that deceit."

Not all of the victims or their descendants knew of the fund's role

Lillie Tyson Head's late father Freddie Lee Tyson was part of the study. She's now president of the Voices group. She called the apology "a wonderful gesture and a wonderful thing" even if it comes 25 years after the U.S. government apologized for the study to its final survivors, who have all since died.

"It's really something that could be used as an example of how apologies can be powerful in making reparations and restorative justice be real," said Head.

Despite her leadership of the descendants group, Head said she didn't even know about Milbank's role in the study until Koller called her one day last fall. The payments have been discussed in academic studies and a couple books, but the descendants were unaware, she said.

"It really was something that caught me off guard," she said. Head's father left the study after becoming suspicious of the research, years before it ended, and didn't receive any of the Milbank money, she said, but hundreds of others did.

Other prominent organizations, universities including Harvard and Georgetown and the state of California have acknowledged their ties to racism and slavery. Historian Susan M. Reverby, who wrote a book about the study, researched the Milbank Fund's participation at the fund's request. She said its apology could be an example for other groups with ties to systemic racism.

'"It's really important because at a time when the nation is so divided, how we come to terms with our racism is so complicated," she said. "Confronting it is difficult, and they didn't have to do this. I think it's a really good example of history as restorative justice."

Hundreds of Black men were targeted in the study

Starting in 1932, government medical workers in rural Alabama withheld treatment from unsuspecting Black men infected with syphilis so doctors could track the disease and dissect their bodies afterward. About 620 men were studied, and roughly 430 of them had syphilis. Reverby's study said Milbank recorded giving a total of $20,150 for about 234 autopsies.

Revealed by The Associated Press in 1972, the study ended and the men sued, resulting in a $9 million settlement from which descendants are still seeking the remaining funds, described in court records as "relatively small."

The Milbank Memorial Fund got involved in 1935 after the U.S. surgeon general at the time, Hugh Cumming, sought the money, which was crucial in persuading families to agree to the autopsies, Reverby found. The decision to approve the funding was made by a group of white men with close ties to federal health officials but little understanding of conditions in Alabama or the cultural norms of Black Southerners, to whom dignified burials were very important, Koller said.

"One of the lessons for us is you get bad decisions if ... your perspectives are not particularly diverse and you don't pay attention to conflicts of interest," Koller said.

The payments became less important as the Depression ended and more Black families could afford burial insurance, Reverby said. Initially named as a defendant, Milbank was dismissed as a target of the men's lawsuit and the organization put the episode behind it.

George Floyd's murder changed things

Years later, books including Reverby's "Examining Tuskegee, The Infamous Syphilis Study and Its Legacy," published in 2009, detailed the fund's involvement. But it wasn't until after Floyd's death at the hands of Minneapolis police that discussions among the Milbank staff — which is now much more diverse — prompted the fund's leaders to reexamine its role, Koller said.

"Both staff and board felt like we had to face up to this in a way that we had not before," he said.

Besides delivering a public apology to a gathering of descendants, the fund decided to donate an undisclosed amount to the Voices for Our Fathers Legacy Foundation, Koller said.

The money will make scholarships available to the descendants, Head said. The group also plans a memorial at Tuskegee University, which served as a conduit for the payments and was the location of a hospital where medical workers saw the men.

While times have changed since the burial payments were first approved nearly 100 years ago, Reverby also said there's no way to justify what happened.

"The records say very clearly, untreated syphilis," she said. "You don't need a Ph.D. to figure that out, and they just kept doing it year after year."

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The U.S Public Health Service (USPHS) Untreated Syphilis Study at Tuskegee was a study conducted between 1932 and 1972. The study was intended to observe the natural history of untreated syphilis. As part of the study, researchers did not collect informed consent from participants and they did not offer treatment, even after it was widely available. The study ended in 1972 on the recommendation of an Ad Hoc Advisory Panel, convened by the Assistant Secretary for Health and Scientific Affairs, following publication of news articles about the study. In 1997, President Clinton issued a formal Presidential Apology , in which he announced an investment to establish what would become The National Center for Bioethics in Research and Health Care at Tuskegee University . Many records can be found in the National Archives .

After the study,  sweeping changes to standard research practices  were made. Efforts to promote the highest ethical standards in research are ongoing today.

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• Facts & Information about Syphilis
• STD Health Equity
• The National Archives – USPHS Untreated Syphilis Study at Tuskegee
• Tuskegee University National Center for Bioethics in Research and Health Care

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Historical Origins of the Tuskegee Experiment: The Dilemma of Public Health in the United States

• PMID: 29311536
• PMCID: PMC10565021
• DOI: 10.13081/kjmh.2017.26.545

The Tuskegee Study of Untreated Syphilis in the Negro Male was an observational study on African-American males in Tuskegee, Alabama between 1932 and 1972. The U. S. Public Health Service ran this study on more than 300 people without notifying the participants about their disease nor treating them even after the introduction of penicillin. The study included recording the progress of disease and performing an autopsy on the deaths. This paper explores historical backgrounds enabled this infamous study, and discusses three driving forces behind the Tuskegee Study. First, it is important to understand that the Public Health Service was established in the U. S. Surgeon General's office and was operated as a military organization. Amidst the development of an imperial agenda of the U.S. in the late 19th and early 20th centuries, the PHS was responsible for protecting hygiene and the superiority of "the American race" against infectious foreign elements from the borders. The U.S. Army's experience of medical experiments in colonies and abroad was imported back to the country and formed a crucial part of the attitude and philosophy on public health. Secondly, the growing influence of eugenics and racial pathology at the time reinforced discriminative views on minorities. Progressivism was realized in the form of domestic reform and imperial pursuit at the same time. Major medical journals argued that blacks were inclined to have certain defects, especially sexually transmitted diseases like syphilis, because of their prodigal behavior and lack of hygiene. This kind of racial ideas were shared by the PHS officials who were in charge of the Tuskegee Study. Lastly, the PHS officials believed in continuing the experiment regardless of various social changes. They considered that black participants were not only poor but also ignorant of and even unwilling to undergo the treatment. When the exposure of the experiment led to the Senate investigation in 1973, the participating doctors of the PHS maintained that their study offered valuable contribution to the medical research. This paper argues that the combination of the efficiency of military medicine, progressive and imperial racial ideology, and discrimination on African-Americans resulted in the Tuskegee Syphilis Experiment.

Keywords: Bad Blood; Eugenics; Progressive Empire; Racial Pathology; the Public Health Service; the U.S. Surgeon General; Tuskegee Syphilis Experiment.

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Bill Clinton apologizes for Tuskegee Experiment

President Clinton: The eight men who are survivors of the syphilis study at Tuskegee are a living link to a time not so very long ago that many Americans would prefer not to remember, but we dare not forget. It was a time when our nation failed to live up to its ideals, when our nation broke the trust with our people that is the very foundation of our democracy. It is not only in remembering that shameful past that we can make amends and repair our nation, but it is in remembering that past that we can build a better present and a better future. And without remembering it, we cannot make amends and we cannot go forward.

So today, America does remember the hundreds of men used in research without their knowledge and consent. We remember them and their family members. Men who were poor and African American, without resources and with few alternatives. They believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed.

Medical people are supposed to help when we need care, but even once a cure was discovered, they were denied help, and they were lied to by their government. Our government is supposed to protect the rights of its citizens; their rights were trampled upon. Forty years; hundreds of men betrayed, along with their wives and children, along with the community in Macon County, Alabama, the City of Tuskegee, the fine university there, and the larger African-American community.

The United States government did something that was wrong — deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens.

To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry. (Applause.)

• Question Using evidence from the text, describe the speech’s structure. Answer The speech begins by laying out its purpose — to recognize and apologize for the syphilis study conducted at Tuskegee in an effort to move forward. The speaker then moves to describe in detail who was involved in the research study, why it was done, and who conducted it. The third paragraph goes into more details about the ways in which the men’s rights were violated and how this affected them and their families. Finally, the speech comes full circle to directly address the perpetrator, the victims, and the necessity of the public recognition and apology.
• Question In the first sentence of the third paragraph, President Clinton declares that “even once a cure was discovered, they were denied help, and they were lied to by their government.” How does this sentence serve as an appropriate introductory sentence for this paragraph? Answer It illustrates the extent to which the government was in the wrong and how inhumane the treatment was of these men. The remainder of the paragraph expands on this violation, as well as how the government’s wrongdoing affected these individuals and their families.
• Question How does remembering the past help “build a better present and a better future”? Answer By remembering the past and speaking plainly about it, all of those involved can air their grievances, ideally move forward to a more-productive place, and fight to make sure the same injustices are not repeated.
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The Crazy True Story Of The Tuskegee Syphilis Experiment

In 1932, the US Public Health Service began conducting a study on the African-American men of Macon County, Alabama. While the men volunteered to be treated for "bad blood," they were never informed of the true nature or the risks of the Tuskegee syphilis experiment.

For 40 years, public health officials engaged in unethical testing of Black sharecroppers, under the guise of offering them free medical treatment. But the men were never really given treatment. Instead, they were given placebos while researchers documented the long-term effects of syphilis on Black men, basing the foundation of their research largely on pseudoscience and eugenics. The medical mistrust sowed by the Tuskegee study would have lasting negative impacts on the African-American community for years to come. 

According to Jean Heller, the reporter who eventually broke the Tuskegee experiment story, the men of Macon County were "strictly targets of opportunity. There was no humanity in this whatsoever. [...] They were just targets. They were just convenient guinea pigs," via "Bad Blood": The Tuskegee Syphilis Study .

"Tuskegee Study of Untreated Syphilis in the Negro Male"

In the 1920s and 1930s, public health was seeped in racial prejudice, and nowhere was it more apparent than in matters of sexual health. Dating back to the Civil War , scientists posited the idea that African Americans were a different species, and the negative effects of this harmful theory continued to influence scientific studies in America throughout the 19th century. By the turn of the 20th century, eugenics had surged in popularity in America, and scientists began presenting a series of pseudoscientific theories regarding the African-American population. Scientific and public health officials claimed that they had larger genitals and a higher sex drive than white people and were more prone to contracting sexually transmitted diseases, like syphilis, according to  McGill University . Most crucially, scientists also believed that African-American men would not seek out or accept treatment for STIs even if they were available.

It was out of this climate of prejudice and racial bias that the infamously unethical "Tuskegee Study of Untreated Syphilis in the Negro Male" was conceived.

Goal of the Tuskegee syphilis experiment

In 1932, Taliaferro Clark, the head of the venereal disease department of the US Public Health Service, designed an experiment that would study the course of untreated syphilis on Black men. While Clark is credited with founding the study, another doctor, Thomas Parran Jr., also played a significant role in beginning the experiment. The sixth US Surgeon General and a prominent Public Health Service official, Parran was a driving force behind the development and implementation of the study, per  The Philadelphia Inquirer .

Parran was influenced by a similar study that had been conducted in Norway over 20 years earlier. "The Oslo study of the natural history of untreated syphilis," conducted between 1891 and 1910, was one of the largest studies on the effects of syphilis. Two thousand patients, both men and women, who had contracted syphilis were left untreated for nearly 20 years in Oslo, per  Science Direct , to understand the natural effects the course of the disease would have on the human body.

The plan for the Tuskegee syphilis experiment was to build on that work, while also comparing the different effects syphilis might have on subjects of different races. Scientists believed that the cardiovascular systems of African Americans would be more significantly impacted by the disease. The initial purpose of the study was to examine the pathology of syphilis in African-American males for six to nine months, according to  Britannica .

"Black Belt"

US Public Health Service officials needed a location to conduct their study, and they found the perfect place in Macon County, Alabama. It was known as the "Black Belt" of the region, both because of the thick, dark soil that made land so fertile for agriculture and because of the large population of Black sharecroppers who made their living working the land, according to Tuskegee University . According to the US Census, 82 percent of Macon County's population was Black in 1930, per " Bad Blood ." The region was very rural, and most sharecroppers were not well-educated. In Macon County, 227 out of every 1,000 African Americans could not read.

A predominantly rural, Black, and illiterate population was ideal for the purposes of the Tuskegee experiment. In January 1932, after seeing Macon Country, Dr. Parran declared, "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," via  The Philadelphia Inquirer . Dr. Clark echoed a similar sentiment, saying: "Macon County is a natural laboratory; a ready-made situation. The rather low intelligence of the Negro population, depressed economic conditions, and the common promiscuous sex relations not only contribute to the spread of syphilis but the prevailing indifference with regard to treatment."

Almost 40 percent of Tuskegee's Black population had syphilis

Tuskegee also had one other major factor that made it the perfect location for the experiment: Almost 40 percent of the Black population of Tuskegee had syphilis by 1929, making it the city with the highest syphilis infection rate in the country, according to  Time .

The US Public Health Service enlisted the help of the Tuskegee Institute, now known as Tuskegee University, and its affiliated hospital to conduct the study. They also enlisted Eunice Rivers, a local nurse, to help establish trust within the community, according to  The Washington Post . Rivers (pictured above) was charged with helping pick up subjects and bring them to their appointments, deliver hot meals, and drop off medicine, but behind the scenes, she was also in charge of keeping records on the men. She also reached out to surviving family members after a subject had passed to encourage them to consent to autopsies. Rivers served as a critical point of connection between the researchers and Macon County's African-American population for the entire 40 years of the study.

Tuskegee subjects were compensated with free food and medical exams

Health officials initially recruited subjects to the study by offering them free medical care. Macon County was not a wealthy region, and health care was not always easy to come by for Black agricultural workers, so it was an enticing offer. However, some men were initially skeptical, suspecting that they were really being examined for military recruitment. To quell these fears, officials began including women and children in their examinations while still adding any eligible men they encountered to the study, according to  McGill University .

In the 1930s, as the Great Depression worsened, the promise of free medical care was an exceptionally temping offer, particularly for an economically impoverished area. However, even the promise of free health care was not enough to entice some of the men to continue the treatments. So as the study went on, the subjects were offered more benefits, including extended medical treatment, free rides to appointments, hot meals on appointment days, medical exams, and even burial stipends, per Tuskegee University .

For some of the treatments, like the painful and ultimately unnecessary spinal taps, Public Health Service officials used a psychological tactic. Enticing them with the offer of a "special free treatment" for their "bad blood," officials convinced many of the men to undergo the dangerous spinal procedure, according to The New Social Worker .

The Tuskegee syphilis experiment went on for 40 years

The original experiment was only supposed to last six to nine months. Initially, the patients were left untreated for around six months and then treated with heavy metals, like arsenic, bismuth, and mercury, per  Britannica , which were commonly used therapies at the time. However, the study subjects were largely only given treatment in order to abide by Alabama guidelines and assuage any fears on the part of the participants.

Researchers released their initial findings in 1934 and published their major paper on the experiment in 1936. However, that same year, researchers declared that they hadn't received enough data and decided to extend the study. Rather than treat the subjects, they chose to follow the infected patients throughout the rest of their lives, documenting the long-term effects of the disease, according to the  CDC .

Initially, they'd recruited 600 Black men to the study, of whom 399 had syphilis. The remaining 201 African-American men who didn't have the disease served as the control group. All of them were then given placebos to continue the ruse that they were being treated, while in reality, none of them were receiving proper medical care. The study went on for 40 years, and when it finally came to an end in 1972, only 74 of the subjects were still alive, per  The New Social Worker .

Informed Consent

One of the main reasons the Tuskegee experiment was so unethical was because the study participants were never provided enough information to be able to give their informed consent. In fact, researchers deliberately withheld information about their disease and the true purpose of the experiment. An intern at the Tuskegee Institute's hospital admitted, "The people who came in were not told what was being done. We told them we wanted to test them. They were not told, so far as I know, what they were being treated for or what they were not being treated for. [The subjects] thought they were being treated for rheumatism or bad stomachs. We didn't tell them we were looking for syphilis. I don't think they would have known what that was," via " Bad Blood ."

The subjects were told only that they were being treated for "bad blood," which could include any number of illnesses, from syphilis to anemia to simple fatigue. None of the subjects were told they were being treated for an STD, and as a result, many unknowingly passed it on to their wives or girlfriends. Because they were not aware what illness they were being treated for, subjects were also not given the option to leave when penicillin became readily available as a syphilis treatment, per the  CDC . None of the patients were informed of the potential dangers, and none ever gave informed consent, making the Tuskegee syphilis experiment one of the most notorious and unethical studies in American history.

Researchers withheld treatment from Tuskegee subjects

When the study began in 1932, there was no known cure for syphilis. However, the study's subjects were repeatedly denied even the minorly effective treatments that were commonly used at the time, like mercury or arsenic.

In 1947, it was determined that penicillin was an effective cure for syphilis, and by the 1950s, it had become the standard treatment and was widely used. Despite knowing this, officials never gave the study subjects penicillin to treat the disease. As a result, 128 of the men died from syphilis or its complications, 40 of their wives were infected, and 19 of their children had the disease passed down to them over the course of the study, according to  McGill University

Study officials went out of their way to ensure that subjects were not treated. In 1934, officials provided all doctors in Macon County a list of study participants, telling them not to treat the subjects. In 1940, they expanded the distribution of the list to the Alabama Health Department. The following year, when some of the subjects were drafted to the Army, their medical entrance exam revealed the disease. Researchers, instead of allowing the men to be treated by Army doctors, pulled the men from the Army. The staff nurse, Eunice Rivers, even once followed a study subject to his personal doctor to ensure that he was not treated for syphilis, per  The Washington Post .

A whistleblower brought the Tuskegee syphilis experiment down

No one raised any concerns about the unethical nature of the study until 1966, when Peter Buxtun, a Public Health Service employee, became suspicious after hearing that a colleague in the venereal disease section had scolded a doctor for treating a Tuskegee study subject with penicillin.

Upon further investigation, Buxtun was shocked to discover the similarities between the syphilis experiment and the crimes that had been brought to court during the 1947 Nuremberg Doctors' Trial. The subsequent Nuremberg Code had been established to prevent unethical experimentation on human subjects, but these ethical guidelines were being steadfastly ignored in the Tuskegee study.

Buxtun wrote a report detailing his concerns about the unethical nature of the experiment, but his report was dismissed by his superiors, who insisted the subjects were all "volunteers." Buxtun argued they were "nothing more than dupes ... being used as human guinea pigs" and were "quite ignorant of the effects of untreated syphilis," via the  Government Accountability Project . When the US Public Health Service chose to continue on with the study, Buxtun decided to go public. He leaked information about the experiment to Jean Heller, a reporter at the Washington Star, who broke the story July 25, 1972. The ensuing public outcry over the unethical nature of the study led to its eventual end in October 1972.

Public outcry

After the Tuskegee story broke, public outcry was immediate. Massachusetts Senator Edward Kennedy called the experiment "outrageous and intolerable," according to the  Government Accountability Project , and held congressional hearings on the matter. An advisory panel was also established to review the study, and in October 1972, the panel ruled that the study was unethical and should be stopped immediately, officially bringing the 40-year experiment to an end.

The study's surviving participants, represented by attorney Fred Gray, filed a class-action lawsuit against the US Public Health Service in the summer of 1973, per  Tuskegee University . The study's remaining subjects were awarded a $9 million settlement. They were also granted lifetime medical benefits and burial services. In 1975, the benefits were extended to include not just the surviving subjects, but all participants' wives and children, as well. In 1995, it was extended one final time, to include health as well as medical benefits for all participants and their families. The Tuskegee Health Benefit Program was established to disperse the benefits, according to the  CDC . 

Congress also passed additional protections for human subjects, including the National Research Act, which required the approval of institutional review boards for all experiments using human test subjects, according to  Britannica . The outcry following the Tuskegee syphilis experiment helped establish many of the modern medical ethical standards that are in place today.

The Tuskegee Syphilis Study Legacy Committee

In 1994, a symposium called "Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy" was held at the Claude Moore Health Sciences Library in Charlottesville, Virginia. The goal of the symposium was twofold: First, they wanted a public apology from the president on behalf of the government for the experiment, according to  Tuskegee University . They achieved this goal on May 16, 1997, when Bill Clinton publicly apologized for the Tuskegee syphilis experiment, saying, "You did nothing wrong, but you were grievously wronged. I apologize and I am sorry that this apology has been so long in coming, " via  Time .

Their second goal was a little more complicated. They hoped to address the lasing damage of the study and set up strategies to address unethical government studies while restoring the reputation of Tuskegee University. The result was the creation of the Tuskegee Syphilis Study Legacy Committee, which first convened in January 1996 and focused on establishing scientific ethics, as well as the founding of Tuskegee University's National Center for Bioethics in Research and Health Care.

Lasting public health effects of the Tuskegee syphilis experiment

In the aftermath of the tests, African-American communities developed a mistrust of public health initiatives that still lingers today. As a result, Black men are less likely to seek health care and treatment than their white counterparts, per  The Atlantic .

According to the  National Bureau of Economic Research , a study "comparing older black men to other demographic groups, before and after the Tuskegee revelation, in varying proximity to the study's victims" found "that the disclosure of the study in 1972 is correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men."

After the experiment had been made public, life expectancy for Black men at age 45 fell up to 1.5 years. The Tuskegee syphilis experiment continued to cause harm to the Black community even years after it officially ended.