Tuskegee Syphilis Study

The Tuskegee Study of Untreated Syphilis in the Negro Male (informally referred to as the Tuskegee Experiment or Tuskegee Syphilis Study) was a study conducted between 1932 and 1972 by the United States Public Health Service (PHS) and the Centers for Disease Control and Prevention (CDC) on a group of nearly 400 African American men with syphilis as well as a control group without. The purpose of the study was to observe the effects of the disease when untreated, to the point of death and autopsy. Although there had been effective treatments to reduce the severity of the disease since the 1920s, the use of penicillin for the treatment of syphilis was widespread as of 1945. Of these men, 399 had latent syphilis, with a control group of 201 men who were not infected. they were deceived by the PHS, who never informed them of their syphilis diagnosis and who provided disguised placebos, ineffective treatments, and diagnostic procedures, such as lumbar punctures, as treatment for "bad blood".

The men were initially told that the experiment was only going to last six months, but it was extended to 40 years.

The study continued, under numerous Public Health Service supervisors, until 1972, when a leak to the press resulted in its termination on November 16 of that year. By then, 28 patients had died directly from syphilis, 100 died from complications related to syphilis, 40 of the patients' wives were infected with syphilis, and 19 children were born with congenital syphilis.

The 40-year Tuskegee Study was a major violation of ethical standards Its revelation led to the 1979 Belmont Report and to the establishment of the Office for Human Research Protections (OHRP) and federal laws and regulations requiring institutional review boards for the protection of human subjects in studies. The OHRP manages this responsibility within the United States Department of Health and Human Services (HHS). "What was done cannot be undone, but we can end the silence," he said. "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."

History

Study details

thumb|Subject blood draw, c. 1953

In 1928, the "Oslo Study of Untreated Syphilis" had reported on the pathologic manifestations of untreated syphilis in several hundred white males. This study was a retrospective study since investigators pieced together information from the histories of patients who had already contracted syphilis but remained untreated for some time. The researchers reasoned that the knowledge gained would benefit humankind; however, it was determined afterward that the doctors did harm their subjects by depriving them of appropriate treatment once it had been discovered. The study was characterized as "the longest non-therapeutic experiment on human beings in medical history." PHS researchers prevented these men from getting treatment, thus depriving them of chances for a cure. Vonderlehr argued, "this study is of great importance from a scientific standpoint. It represents one of the last opportunities which the science of medicine will have to conduct an investigation of this kind. ... [Study] Doctor [Murray] Smith ... asked that these men be excluded from the list of draftees needing treatment. ... in order to make it possible to continue this study on an effective basis." thumb|Subjects talking with study coordinator, Nurse Eunice Rivers, c. 1970|alt=By the end of the study in 1972, only 74 of the test subjects were still alive. communication of diagnosis and accurate reporting of test results.

Study clinicians

The venereal disease section of the U.S. Public Health Service (PHS) formed a study group in 1932 at its national headquarters in Washington, D.C. Taliaferro Clark, head of the USPHS, is credited with founding it. His initial goal was to follow untreated syphilis in a group of African-American men for six months to one year, and then follow up with a treatment phase. When the Rosenwald Fund withdrew its financial support, a treatment program was deemed too expensive. Clark, however, decided to continue the study, interested in determining whether syphilis had a different effect on African-Americans than it did on whites. A retrospective study of untreated syphilis in white males had been conducted in Oslo, Norway, and could provide the basis for comparison. The prevailing belief at the time was white people were more likely to develop neurosyphilis and that Black people were more likely to sustain cardiovascular damage. Clark resigned before the study was extended beyond its original length.

Although Clark is usually assigned blame for conceiving the U.S. Public Health Service Syphilis Study at Tuskegee, Thomas Parran Jr. also helped develop a non-treatment study in Macon County, Alabama. As the Health Commissioner of New York State (and former head of the PHS Venereal Disease Division), Parran was asked by the Rosenwald Fund to assess their serological survey of syphilis and demonstration projects in five Southern states. Among his conclusions was the recommendation that: "If one wished to study the natural history of syphilis in the African American race uninfluenced by treatment, this county (Macon) would be an ideal location for such a study."

Oliver C. Wenger was the director of the regional PHS Venereal Disease Clinic in Hot Springs, Arkansas. He and his staff took the lead in developing study procedures. Wenger continued to advise and assist the study when it was adapted as a long-term, no-treatment observational study after funding for treatment was lost.

Raymond A. Vonderlehr was appointed on-site director of the research program and developed the policies that shaped the long-term follow-up section of the project. His method of gaining the "consent" of the subjects for spinal taps (to look for signs of neurosyphilis) was by advertising this diagnostic test as a "special free treatment".

Several African-American health workers and educators associated with the Tuskegee Institute played a critical role in the study's progress. The extent to which they knew about the full scope of the study is not clear in all cases.

Nurse Eunice Rivers, who had trained at Tuskegee Institute and worked at its hospital, was recruited at the start of the study to be the main point of contact with the participants. As a part of "Miss Rivers' Lodge", participants would receive free physical examinations at Tuskegee University, free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments. Rivers was also key in convincing families to sign autopsy agreements in return for funeral benefits. As the study became long-term, Rivers became the chief person who provided continuity to the participants. She was the only study staff person to work with participants for the full 40 years. His letter, read by Anne R. Yobs, one of the study's authors, was immediately ignored and filed away with a brief memo that no reply would be sent. The CDC, which by then controlled the study, reaffirmed the need to continue the study until completion; i.e. until all subjects had died and been autopsied. To bolster its position, the CDC received unequivocal support for the continuation of the study, both from local chapters of the National Medical Association (representing African-American physicians) and the American Medical Association (AMA). He did not succeed; it is not clear who read his work.

Buxtun finally went to the press in the early 1970s. The story broke first in the Washington Star on July 25, 1972, reported by Jean Heller of the Associated Press.

Aftermath

In 1974, Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants. Within the United States Department of Health and Human Services, the Office for Human Research Protections (OHRP) was established to oversee clinical trials. As a result, new studies require informed consent, The Committee had two related goals:

Five of the eight study survivors attended the White House ceremony.

The presidential apology led to progress in addressing the second goal of the Legacy Committee. The federal government contributed to establishing the National Center for Bioethics in Research and Health Care at Tuskegee, which officially opened in 1999 to explore issues that underlie research and medical care of African Americans and other under-served people.

In 2009, the Legacy Museum opened in the Bioethics Center, to honor the hundreds of participants of the Tuskegee Study of Untreated Syphilis in the African American Male.

In June 2022, the Milbank Memorial Fund apologized to descendants of the study's victims for its the role in the study.

Study participants

thumb|right|100px|Charlie Pollard, survivorThe five survivors who attended the White House ceremony in 1997 were Charlie Pollard, Herman Shaw, Carter Howard, Fred Simmons, and Frederick Moss. The remaining three survivors had family members attend the ceremony in their name. Sam Doner was represented by his daughter, Gwendolyn Cox; Ernest Hendon by his brother, North Hendon; and George Key by his grandson, Christopher Monroe.

Taliaferro Clark said, "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 regards to treatment." Observers believe that the abuses of the study may have contributed to the reluctance of many poor black people to seek routine preventive care. A 1999 survey showed that 80% of African-American men wrongly believed the men in the study had been injected with syphilis. after President Clinton's apology. She argued that while the Tuskegee Syphilis Study contributed to African Americans' continuing mistrust of the biomedical community, the study was not the most important reason. She called attention to a broader historical and social context that had already negatively influenced community attitudes, including countless prior medical injustices before the study's start in 1932. These dated back to the antebellum period, when slaves had been used for unethical and harmful experiments including tests of endurance against and remedies for heatstroke and experimental gynecological surgeries without anesthesia. African Americans' graves were robbed to provide cadavers for dissection, a practice that continued, along with other abuses, after the American Civil War.

A 2016 paper by Marcella Alsan and Marianne Wanamaker found "that the historical disclosure of the [Tuskegee experiment] in 1972 is correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men. Our estimates imply life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for approximately 35% of the 1980 life expectancy gap between black and white men." The authors further observed that the decline also represented 25% of the gender gap in Black life expectancy at that time. The authors noted that the extent of this effect was comparable to major public health benchmarks, such as eliminating smoking or the impact of the Great Migration on life expectancy. Aslan and Wanamaker's study provides evidence that reduced trust in medical institutions was fueled by the Tuskegee disclosure, having measurable effects on health attitudes and outcomes on the Black community.

Studies that have investigated the willingness of black Americans to participate in medical studies have not drawn consistent conclusions related to the willingness and participation in studies by racial minorities. The Tuskegee Legacy Project Questionnaire found that, even though black Americans are four times more likely to know about the syphilis trials than are whites, they are two to three times more willing to participate in biomedical studies.

Distrust of the government, in part formed through the study, contributed to persistent rumors during the 1980s in the black community that the government was responsible for the HIV/AIDS crisis by having deliberately introduced the virus to the black community as some kind of experiment. In February 1992 on ABC's Prime Time Live, journalist Jay Schadler interviewed Dr. Sidney Olansky, Public Health Services director of the study from 1950 to 1957. When asked about the lies that were told to the study subjects, Olansky said, "The fact that they were illiterate was helpful, too, because they couldn't read the newspapers. If they were not, as things moved on they might have been reading newspapers and seen what was going on." In 2001, a court compared the Kennedy Krieger Institute's Lead-Based Paint Abatement and Repair and Maintenance Study to the Tuskegee experiments.

Some African Americans have been hesitant to get vaccinated against COVID-19 due to the Tuskegee experiments. In September 2021, the right-wing group America's Frontline Doctors, which has promoted COVID-19 conspiracy theories and misinformation, filed a lawsuit against New York City, claiming that its vaccine passport health orders were inherently discriminatory against African Americans due to the "historical context".

Ethical implications

The U.S. Public Health Service Syphilis Study at Tuskegee highlighted issues in race and science. The aftershocks of this study, and other human experiments in the United States, led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act. In spite of these events, the protocols of the study were not re-evaluated according to the new standards, even though whether or not the study should continue was re-evaluated several times (including in 1969 by the CDC). U.S. government officials and medical professionals kept silent and the study did not end until 1972, nearly three decades after the Nuremberg trials. Due to the lack of information, the participants were manipulated into continuing the study without full knowledge of their role or their choices. Since the late 20th century, IRBs established in association with clinical studies requirements that all involved in the study be willing and voluntary participants.

The Tuskegee University Legacy Museum has on display a check issued by the United States government on behalf of Dan Carlis to Lloyd Clements, Jr., a descendant of one of the U.S. Public Health Service Syphilis Study at Tuskegee participants. Lloyd Clements, Jr.'s great-grandfather Dan Carlis and two of his uncles, Ludie Clements and Sylvester Carlis, were in the study. Original legal paperwork for Sylvester Carlis related to the study is on display at the museum as well. Lloyd Clements, Jr. has worked with noted historian Susan Reverby concerning his family's involvement with the U.S. Public Health Service Syphilis Study at Tuskegee.

;Music

The lyrics of Gil Scott-Heron's 33-second song, "Tuskeegee #626", featured on the Bridges (1977) LP, details and condemns the U.S. Public Health Service Syphilis Study at Tuskegee.
Frank Zappa's 1984 album Thing Fish was heavily inspired by the events of the Tuskegee Syphilis Study.
Avant-garde metal band Zeal & Ardor's song "Tuskegee", from the 2020 EP Wake of a Nation, is about the Tuskegee Syphilis Study.
Hip-hop duo Pete Rock & C.L. Smooth mention the Tuskegee Experiment in the song "Anger In The Nation" from their 1992 album Mecca And The Soul Brother.
Jazz musician Don Byron's 1992 album Tuskegee Experiments was inspired by the study.
Atlanta-based rapper JID juxtaposes his life to the Tuskegee Experiment in his 2021 song "Skegee".

;Television

The 1992 Secret History series documentary "Bad Blood" is about the experiment.
Miss Evers' Boys (1997), a TV adaptation of David Feldshuh's eponymous 1992 stage play, was nominated for 11 Emmy Awards and won in four categories.

;Video production

Medical Racism: The New Apartheid (2021) exploits the Tuskegee trials to promote COVID-19 misinformation.

References

External links

(Archived.)

Tuskegee Syphilis Study

History

Study details

Study clinicians

Aftermath

Study participants

Ethical implications

See also

References

Further reading

Primary sources

Secondary sources

External links