Tuskegee Study of Untreated Syphilis in the Negro Male
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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 The United States Public Health Service (USPHS or PHS) is a collection of agencies of the Department of Health and Human Services concerned with public health, containing nine out of the department's twelve operating divisions. The Assistant ...
(PHS) and the
Centers for Disease Control and Prevention The Centers for Disease Control and Prevention (CDC) is the national public health agency of the United States. It is a United States federal agency, under the Department of Health and Human Services, and is headquartered in Atlanta, Georgi ...
(CDC) on a group of nearly 400 African Americans with syphilis. The purpose of the study was to observe the effects of the disease when untreated, though by the end of the study medical advancements meant it was entirely treatable. The men were not informed of the nature of the experiment, and more than 100 died as a result. The Public Health Service started the study in 1932 in collaboration with
Tuskegee University Tuskegee University (Tuskegee or TU), formerly known as the Tuskegee Institute, is a private, historically black land-grant university in Tuskegee, Alabama. It was founded on Independence Day in 1881 by the state legislature. The campus was de ...
(then the Tuskegee Institute), a
historically Black college Historically black colleges and universities (HBCUs) are institutions of higher education in the United States that were established before the Civil Rights Act of 1964 with the intention of primarily serving the African-American community. M ...
in Alabama. In the study, investigators enrolled a total of 600 impoverished African-American sharecroppers from
Macon County, Alabama Macon County is a county located in the east central part of the U.S. state of Alabama. As of the 2020 census, the population was 19,532. Its county seat is Tuskegee. Its name is in honor of Nathaniel Macon, a member of the United States Senat ...
. Of these men, 399 had latent syphilis, with a control group of 201 men who were not infected. As an incentive for participation in the study, the men were promised free medical care. While the men were provided with both medical and mental care that they otherwise would not have received, they were deceived by the PHS, who never informed them of their syphilis diagnosis and provided disguised placebos, ineffective methods, and diagnostic procedures 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. After funding for treatment was lost, the study was continued without informing the men that they would never be treated. None of the infected men were treated with penicillin despite the fact that, by 1947, the antibiotic was widely available and had become the standard treatment for syphilis. 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 Ethics or moral philosophy is a branch of philosophy that "involves systematizing, defending, and recommending concepts of right and wrong behavior".''Internet Encyclopedia of Philosophy'' The field of ethics, along with aesthetics, concerns ma ...
, and has been cited as "arguably the most infamous biomedical research study in U.S. history." Its revelation led to the 1979
Belmont Report The ''Belmont Report'' is a report created by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Its full title is the ''Belmont Report: Ethical Principles and Guidelines for the Protection of Human ...
and to the establishment of the
Office for Human Research Protections The Office for Human Research Protections (OHRP) is a small office within the United States Department of Health and Human Services (DHHS), specifically the Office of the Assistant Secretary for Health in the Office of the Secretary of DHHS, that d ...
(OHRP) and federal laws and regulations requiring
institutional review board An institutional review board (IRB), also known as an independent ethics committee (IEC), ethical review board (ERB), or research ethics board (REB), is a committee that applies research ethics by reviewing the methods proposed for research to ens ...
s for the protection of human subjects in studies. The OHRP manages this responsibility within the
United States Department of Health and Human Services The United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the U.S. federal government created to protect the health of all Americans and providing essential human services. Its motto is ...
(HHS). Its revelation has also been an important cause of distrust in medical science and the US government amongst African Americans. On May 16, 1997, President
Bill Clinton William Jefferson Clinton ( né Blythe III; born August 19, 1946) is an American politician who served as the 42nd president of the United States from 1993 to 2001. He previously served as governor of Arkansas from 1979 to 1981 and agai ...
formally apologized on behalf of the United States to victims of the study, calling it shameful and racist. "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

In 1928, the "Oslo Study of Untreated Syphilis" had reported on the
pathologic ''Pathologic'' ( rus, Мор. Утопия, Mor. Utopiya, ˈmor ʊˈtopʲɪjə, , More. Utopia – a pun on Thomas More's ''Utopia'' and the Russian word for "plague") is a 2005 role-playing and survival game developed by Russian studio Ice-Pic ...
manifestations of untreated syphilis in several hundred white males. This study was a
retrospective study A retrospective cohort study, also called a historic cohort study, is a longitudinal cohort study used in medical and psychological research. A cohort of individuals that share a common exposure factor is compared with another group of equival ...
since investigators pieced together information from the histories of patients who had already contracted syphilis but remained untreated for some time. The U.S. Public Health Service Syphilis Study at Tuskegee group decided to build on the Oslo work and perform a prospective study to complement it. The U.S. Public Health Service Syphilis Study at Tuskegee began as a 6-month descriptive epidemiological study of the range of pathology associated with syphilis in the population of Macon County. The researchers involved with the study reasoned that they were not harming the men involved in the study, under the presumption that they were unlikely to ever receive treatment. At that time, it was believed that the effects of syphilis depended on the race of those affected. Physicians believed that syphilis had a more pronounced effect on African-Americans' cardiovascular systems than on their
central nervous system The central nervous system (CNS) is the part of the nervous system consisting primarily of the brain and spinal cord. The CNS is so named because the brain integrates the received information and coordinates and influences the activity of all p ...
s. Investigators enrolled in the study a total of 600 impoverished, African-American sharecroppers. Of these men, 399 had latent syphilis, with a control group of 201 men who were not infected. As an incentive for participation in the study, the men were promised free medical care, but were deceived by the PHS, who never informed subjects of their diagnosis, despite the risk of infecting others, and the fact that the disease could lead to blindness, deafness, mental illness, heart disease, bone deterioration, the collapse of the central nervous system, and death. Instead, the men were told that they were being treated for "bad blood", a colloquialism that described various conditions such as syphilis,
anemia Anemia or anaemia (British English) is a blood disorder in which the blood has a reduced ability to carry oxygen due to a lower than normal number of red blood cells, or a reduction in the amount of hemoglobin. When anemia comes on slowly, t ...
, and fatigue. The collection of illnesses the term included was a leading cause of death within the southern African-American community. At the study's commencement, major medical textbooks had recommended that all syphilis be treated, as the consequences were quite severe. At that time, treatment included treatment with
arsenic Arsenic is a chemical element with the symbol As and atomic number 33. Arsenic occurs in many minerals, usually in combination with sulfur and metals, but also as a pure elemental crystal. Arsenic is a metalloid. It has various allotropes, ...
-based compounds such as
arsphenamine Arsphenamine, also known as Salvarsan or compound 606, is a drug that was introduced at the beginning of the 1910s as the first effective treatment for syphilis, relapsing fever, and African trypanosomiasis. This organoarsenic compound was the f ...
(branded as the "606" formula). Initially, subjects were studied for six to eight months and then treated with contemporary methods, including
Salvarsan Arsphenamine, also known as Salvarsan or compound 606, is a drug that was introduced at the beginning of the 1910s as the first effective treatment for syphilis, relapsing fever, and African trypanosomiasis. This organoarsenic compound was the fi ...
("606"),
mercurial Mercurial is a distributed revision control tool for software developers. It is supported on Microsoft Windows and Unix-like systems, such as FreeBSD, macOS, and Linux. Mercurial's major design goals include high performance and scalability, d ...
ointments, and
bismuth Bismuth is a chemical element with the symbol Bi and atomic number 83. It is a post-transition metal and one of the pnictogens, with chemical properties resembling its lighter group 15 siblings arsenic and antimony. Elemental bismuth occurs ...
, which were mildly effective and highly toxic. Additionally, men in the study were administered disguised placebos, ineffective methods, and diagnostic procedures, which were misrepresented as treatments for syphilis and/or "bad blood". Throughout, participants remained ignorant of the study clinicians' true purpose, which was to observe the natural course of untreated syphilis. Study clinicians could have chosen to treat all syphilitic subjects and close the study, or split off a control group for testing with penicillin. Instead, they continued the study without treating any participants; they withheld treatment and information about penicillin from the subjects. In addition, scientists prevented participants from accessing syphilis treatment programs available to other residents in the area. 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." To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic spinal taps, doctors sent participants a misleading letter titled "Last Chance for Special Free Treatment". The U.S. Public Health Service Syphilis Study at Tuskegee published its first clinical data in 1934 and issued its first major report in 1936. This was before the discovery of penicillin as a safe and effective treatment for syphilis. The study was not secret, since reports and data sets were published to the medical community throughout its duration. During World War II, 256 of the infected subjects registered for the draft and were consequently diagnosed as having syphilis at military induction centers and ordered to obtain treatment for syphilis before they could be taken into the armed services. 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. ...
tudy Tudy may refer to: People * Tudy of Landevennec, Breton saint Places * Île-Tudy, France * St Tudy St Tudy ( kw, Eglostudi) is a civil parish and village in north Cornwall, England, United Kingdom. The village is situated in the River Camel ...
Doctor
urray Urray ( gd, Urrath) is a scattered village and coastal parish, consisting of Easter, Old and Wester Urray and is located in the county of Ross in the Scottish council area of the Highland. Urray is also a parish in the district of Wester Ros ...
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." Later, Smith, a local PHS representative involved in the study, wrote to Vonderlehr to ask what should be done with patients who had tested negative for syphilis at the time of enrollment in the study and were being used as control subjects but had later tested positive when registering for the draft: "So far, we are keeping the known positive patients from getting treatment. Is a control case of any value to the study, if he has contracted syphilis? Shall we withhold treatment from the control case who has developed syphilis?" Vonderlehr replied that such cases "have lost their value to the study. There is no reason why these patients should not be given appropriate treatment unless you hear from Doctor Austin V. Deibert who is in direct charge of the study". By 1947, penicillin had become standard therapy for syphilis. The U.S. government sponsored several public health programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate
venereal disease Sexually transmitted infections (STIs), also referred to as sexually transmitted diseases (STDs) and the older term venereal diseases, are infections that are Transmission (medicine), spread by Human sexual activity, sexual activity, especi ...
came to Macon County, study researchers prevented their subjects from participating. Although some of the men in the study received arsenical or penicillin treatments elsewhere, for most of them this did not amount to "adequate therapy". By the end of the study in 1972, only 74 of the test subjects were still alive. Of the original 399 men, 28 had died of syphilis, 100 died of related complications, 40 of their wives had been infected, and 19 of their children were born with
congenital syphilis Congenital syphilis is syphilis present ''in utero'' and at birth, and occurs when a child is born to a mother with syphilis. Untreated early syphilis infections results in a high risk of poor pregnancy outcomes, including saddle nose, lower extr ...
. The revelation in 1972 of study failures by
whistleblower A whistleblower (also written as whistle-blower or whistle blower) is a person, often an employee, who reveals information about activity within a private or public organization that is deemed illegal, immoral, illicit, unsafe or fraudulent. Whi ...
Peter Buxtun Peter Buxtun (sometimes referred to as Peter Buxton; born 1937 in Prague) is a former employee of the United States Public Health Service who became known as the whistleblower responsible for ending the Tuskegee syphilis experiment. Personal l ...
led to major changes in U.S. law and regulation concerning the protection of participants in clinical studies. Studies now require informed consent, communication of
diagnosis Diagnosis is the identification of the nature and cause of a certain phenomenon. Diagnosis is used in many different disciplines, with variations in the use of logic, analytics, and experience, to determine " cause and effect". In systems engin ...
and accurate reporting of test results.


Study clinicians

The
venereal disease Sexually transmitted infections (STIs), also referred to as sexually transmitted diseases (STDs) and the older term venereal diseases, are infections that are Transmission (medicine), spread by Human sexual activity, sexual activity, especi ...
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 The Rosenwald Fund (also known as the Rosenwald Foundation, the Julius Rosenwald Fund, and the Julius Rosenwald Foundation) was established in 1917 by Julius Rosenwald and his family for "the well-being of mankind." Rosenwald became part-owner of S ...
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 Caucasians. A regressive 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. Thomas Parran (September 28, 1892 – February 16, 1968) was an American physician and Public Health Service officer. He was appointed the sixth Surgeon General of the United States from 1936 to 1948, and oversaw the notorious Tuskegee syphilis e ...
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 Hot Springs is a resort city in the state of Arkansas and the county seat of Garland County. The city is located in the Ouachita Mountains among the U.S. Interior Highlands, and is set among several natural hot springs for which the city is n ...
. 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 Consent occurs when one person voluntarily agrees to the proposal or desires of another. It is a term of common speech, with specific definitions as used in such fields as the law, medicine, research, and sexual relationships. Consent as und ...
" of the subjects for spinal taps (to look for signs of
neurosyphilis Neurosyphilis refers to infection of the central nervous system in a patient with syphilis. In the era of modern antibiotics the majority of neurosyphilis cases have been reported in HIV-infected patients. Meningitis is the most common neurologic ...
) was by advertising this diagnostic test as a "special free treatment". He also met with local black doctors and asked them to deny treatment to participants in the Tuskegee Study. Vonderlehr retired as head of the venereal disease section in 1943, shortly after penicillin was proven to cure syphilis. Several African-American health workers and educators associated with the
Tuskegee Institute Tuskegee University (Tuskegee or TU), formerly known as the Tuskegee Institute, is a private, historically black land-grant university in Tuskegee, Alabama. It was founded on Independence Day in 1881 by the state legislature. The campus was de ...
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.
Robert Russa Moton Robert Russa Moton (August 26, 1867 – May 31, 1940) was an American educator and author. He served as an administrator at Hampton Institute. In 1915 he was named principal of Tuskegee Institute, after the death of founder Booker T. Washington, ...
, then president of Tuskegee Institute, and Eugene Dibble, head of the Institute's John A. Andrew Memorial Hospital, both lent their endorsement and institutional resources to the government study. 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. Rivers played a crucial role in the study because she served as the direct link to the regional African-American community. Vonderlehr considered her participation to be the key to gaining the trust of the subjects and promoting their participation. As a part of "Miss Rivers' Lodge", participants would receive free physical examinations at
Tuskegee University Tuskegee University (Tuskegee or TU), formerly known as the Tuskegee Institute, is a private, historically black land-grant university in Tuskegee, Alabama. It was founded on Independence Day in 1881 by the state legislature. The campus was de ...
, 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. File:vonderle.gif, Raymond A. Vonderlehr (medical doctor) File:Eugene Dibble.jpg, Eugene Dibble (medical doctor) File:Eunice Rivers.jpg, Eunice Rivers (nurse)


Study termination

Several men employed by the PHS, namely Austin V. Deibert and Albert P. Iskrant, expressed criticism of the study, on the grounds of immorality and poor scientific practice. The first dissenter against the study who was not involved in the PHS was
Count Gibson Count Dillon Gibson, Jr. (July 10, 1921 – July 23, 2002) was an American physician known for his advocacy in medical civil rights. As a young professor at the Medical College of Virginia, in 1955 he became the first person outside Tuskegee Syp ...
, an associate professor at the Medical College of Virginia in Richmond. He expressed his ethical concerns to PHS's Sidney Olansky in 1955. Another dissenter was Irwin Schatz, a young Chicago doctor only four years out of medical school. In 1965, Schatz read an article about the study in a medical journal and wrote a letter directly to the study's authors confronting them with a declaration of brazen unethical practice. 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. In 1966,
Peter Buxtun Peter Buxtun (sometimes referred to as Peter Buxton; born 1937 in Prague) is a former employee of the United States Public Health Service who became known as the whistleblower responsible for ending the Tuskegee syphilis experiment. Personal l ...
, a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases expressing his concerns about the ethics and morality of the extended U.S. Public Health Service Syphilis Study at Tuskegee. 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 The National Medical Association (NMA) is the largest and oldest national organization representing African American physicians and their patients in the United States. The NMA is a 501(c)(3) national professional and scientific organization repr ...
(representing African-American physicians) and the
American Medical Association The American Medical Association (AMA) is a professional association and lobbying group of physicians and medical students. Founded in 1847, it is headquartered in Chicago, Illinois. Membership was approximately 240,000 in 2016. The AMA's sta ...
(AMA). In 1968, William Carter Jenkins, an African-American statistician in the PHS and part of the
Department of Health, Education, and Welfare The United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the U.S. federal government created to protect the health of all Americans and providing essential human services. Its motto is ...
(HEW), founded and edited ''The Drum'', a newsletter devoted to ending racial discrimination in HEW. In ''The Drum'', Jenkins called for an end to the study. 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 ''The Washington Star'', previously known as the ''Washington Star-News'' and the Washington ''Evening Star'', was a daily afternoon newspaper published in Washington, D.C., between 1852 and 1981. The Sunday edition was known as the ''Sunday Sta ...
'' on July 25, 1972, reported by Jean Heller of the Associated Press. It became front-page news in the ''
New York Times ''The New York Times'' (''the Times'', ''NYT'', or the Gray Lady) is a daily newspaper based in New York City with a worldwide readership reported in 2020 to comprise a declining 840,000 paid print subscribers, and a growing 6 million paid ...
'' the following day. Senator
Edward Kennedy Edward Moore Kennedy (February 22, 1932 – August 25, 2009) was an American lawyer and politician who served as a United States senator from Massachusetts for almost 47 years, from 1962 until his death in 2009. A member of the Democratic ...
called Congressional hearings, at which Buxtun and HEW officials testified. As a result of public outcry, the CDC and PHS appointed an ad hoc advisory panel to review the study. The panel found that the men agreed to certain terms of the experiment, such as examination and treatment. However, they were not informed of the study's actual purpose. The panel then determined that the study was medically unjustified and ordered its termination. In 1974, as part of the settlement of a
class action lawsuit A class action, also known as a class-action lawsuit, class suit, or representative action, is a type of lawsuit where one of the parties is a group of people who are represented collectively by a member or members of that group. The class actio ...
filed by the NAACP on behalf of study participants and their descendants, the U.S. government paid $10 million ($51.8 million in 2019) and agreed to provide free medical treatment to surviving participants and surviving family members infected as a consequence of the study. Congress created a commission empowered to write regulations to deter such abuses from occurring in the future. A collection of materials compiled to investigate the study is held at the
National Library of Medicine The United States National Library of Medicine (NLM), operated by the United States federal government, is the world's largest medical library. Located in Bethesda, Maryland, the NLM is an institute within the National Institutes of Health. Its ...
in Bethesda, Maryland.


Aftermath

In 1974, Congress passed the
National Research Act The National Research Act was enacted by the 93rd United States Congress and signed into law by President Richard Nixon on July 12, 1974, after a series of congressional hearings on human-subjects research, directed by Senator Edward Kennedy. The ...
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 United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the U.S. federal government created to protect the health of all Americans and providing essential human services. Its motto is ...
, the
Office for Human Research Protections The Office for Human Research Protections (OHRP) is a small office within the United States Department of Health and Human Services (DHHS), specifically the Office of the Assistant Secretary for Health in the Office of the Secretary of DHHS, that d ...
(OHRP) was established to oversee clinical trials. Now studies require informed consent, communication of diagnosis and accurate reporting of test results. Institutional review boards (IRBs), including laypeople, are established in scientific research groups and hospitals to review study protocols, protect patient interests, and ensure that participants are fully informed. In 1994, a multi-disciplinary symposium was held on the U.S. Public Health Service Syphilis Study at Tuskegee: ''Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy'' at the
University of Virginia The University of Virginia (UVA) is a public research university in Charlottesville, Virginia. Founded in 1819 by Thomas Jefferson, the university is ranked among the top academic institutions in the United States, with highly selective ad ...
. Following that, interested parties formed the Tuskegee Syphilis Study Legacy Committee to develop ideas that had arisen at the symposium, chaired by Vanessa Northington Gamble. It issued its final report in May 1996, having been established at a meeting on January 18–19 of that year. The Committee had two related goals: # President
Bill Clinton William Jefferson Clinton ( né Blythe III; born August 19, 1946) is an American politician who served as the 42nd president of the United States from 1993 to 2001. He previously served as governor of Arkansas from 1979 to 1981 and agai ...
should publicly apologize to the survivors and their community for past government wrongdoing related to the study due to the harm done to the Macon County community and Tuskegee University, and the fears of government and medical abuse the study created among African Americans. No apology had yet been issued at the time. # The Committee and relevant federal agencies should develop a strategy to redress the damages, specifically recommending the creation of a center at Tuskegee University for public education about the study, "training programs for
health care providers A health professional, healthcare professional, or healthcare worker (sometimes abbreviated HCW) is a provider of health care treatment and advice based on formal training and experience. The field includes those who work as a nurse, physician (suc ...
", and a center for the study of ethics in scientific research. A year later on May 16, 1997, Bill Clinton formally apologized and held a ceremony at the White House for surviving Tuskegee study participants. He said: 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

The 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. The last man who was a participant in the study died in 2004. Charlie Pollard appealed to civil rights attorney Fred D. Gray, who also attended the White House ceremony, for help when he learned the true nature of the study he had been participating in for years. In 1973, ''Pollard v. United States'' resulted in a $10 million settlement. Another participant of the study was Freddie Lee Tyson, a sharecropper who helped build
Moton Field Moton may refer to: People Given name * Moton Hopkins (born 1986), American professional gridiron football player Surname * LeVelle Moton (born 1974), American college basketball coach * Robert Russa Moton (1867–1940), African American educator a ...
, where the legendary "
Tuskegee Airmen The Tuskegee Airmen were a group of primarily African American military pilots (fighter and bomber) and airmen who fought in World War II. They formed the 332d Fighter Group and the 477th Bombardment Group (Medium) of the United States Army ...
" learned to fly during World War II.


Legacy


Scientific failings

Aside from a study of racial differences, one of the main goals that researchers in the study wanted to accomplish was to determine the extent to which treatment for syphilis was necessary and at what point in the progression of the disease it should be treated. For this reason, the study emphasized observation of individuals with late latent syphilis. However, despite clinicians' attempts to justify the study as necessary for science, the study itself was not conducted in a scientifically viable way. Because participants were treated with mercury rubs, injections of neoarsphenamine, protiodide,
Salvarsan Arsphenamine, also known as Salvarsan or compound 606, is a drug that was introduced at the beginning of the 1910s as the first effective treatment for syphilis, relapsing fever, and African trypanosomiasis. This organoarsenic compound was the fi ...
, and bismuth, the study did not follow subjects whose syphilis was untreated, however minimally effective these treatments may have been. Austin V. Deibert of the PHS recognized that since the study's main goal had been compromised in this way, the results would be meaningless and impossible to manipulate statistically. Even the toxic treatments that were available before the availability of penicillin, according to Deibert, could "greatly lower, if not prevent, late syphilitic cardiovascular disease ...
hile Hile ( ne, हिले) is a hill town located in the Eastern Part of Nepal, 13 km north of the regional center of Dhankuta Bazar. At an elevation of 1948 meters, it is the main route to other hilly districts like Bhojpur and Sankhuwasab ...
increas ngthe incidence of neuro-recurrence and other forms of relapse." Despite their effectiveness, these treatments were never prescribed to the participants.


Racism

The conception which lay behind the U.S. Public Health Service Syphilis Study at Tuskegee in 1932, in which 100% of its participants were poor, rural African-American men with very limited access to health information, reflects the racial attitudes in the U.S. at that time. The clinicians who led the study assumed that African-Americans were particularly susceptible to
venereal diseases Sexually transmitted infections (STIs), also referred to as sexually transmitted diseases (STDs) and the older term venereal diseases, are infections that are spread by sexual activity, especially vaginal intercourse, anal sex, and oral s ...
because of their race, and they assumed that the study's participants were not interested in receiving medical treatment. 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." In reality, the promise of medical treatment, usually reserved only for emergencies among the rural black population of Macon County, Alabama, was what secured subjects' cooperation in the study.


Public trust

The revelations of mistreatment under the U.S. Public Health Service Syphilis Study at Tuskegee are believed to have significantly damaged the trust of the black community toward public health efforts in the United States. Observers believe that the abuses of the study may have contributed to the reluctance of many poor black people to seek routine
preventive care Preventive healthcare, or prophylaxis, consists of measures taken for the purposes of disease prevention.Hugh R. Leavell and E. Gurney Clark as "the science and art of preventing disease, prolonging life, and promoting physical and mental hea ...
. A 1999 survey showed that 80% of African-American men wrongly believed the men in the study had been injected with syphilis. While the final report of the Tuskegee Syphilis Study Legacy Committee noted that the study had contributed to fears among the African American community of abuse and exploitation by government officials and medical professionals, medical mistreatment of African Americans and resulting mistrust predates the Tuskegee Syphilis Study. Vanessa Northington Gamble, who had chaired the committee, addressed this in a seminal article published in 1997 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 In the history of the Southern United States, the Antebellum Period (from la, ante bellum, lit= before the war) spanned the end of the War of 1812 to the start of the American Civil War in 1861. The Antebellum South was characterized by ...
, when slaves had been used for unethical and harmful experiments including tests of endurance against and remedies for
heatstroke Heat stroke or heatstroke, also known as sun stroke, is a severe heat illness that results in a body temperature greater than , along with red skin, headache, dizziness, and confusion. Sweating is generally present in exertional heatstroke, b ...
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 The American Civil War (April 12, 1861 – May 26, 1865; also known by other names) was a civil war in the United States. It was fought between the Union ("the North") and the Confederacy ("the South"), the latter formed by states ...
. A 2016 paper by
Marcella Alsan Marcella Alsan is an infectious disease physician and an applied microeconomist studying health inequality. She is currently a Professor of Public Policy at the Harvard Kennedy School and was previously an Associate Professor of Medicine at Stanf ...
and Marianne Wanamaker found "that the historical disclosure of the uskegee experimentin 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." 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. Some of the factors that continue to limit the credibility of these few studies is how awareness differs significantly across studies. For instance, it appears that the rates of awareness differ as a function of the method of assessment. Study participants who reported awareness of the Tuskegee syphilis study are often misinformed about the results and issues, and awareness of the study is not reliably associated with unwillingness to participate in scientific research. 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 Jay Schadler is a journalist, photographer and artist. Oprah Winfrey described Mr. Schadler like this: "Jay has the eyes of a journalist and the heart of a storyteller. For more than three decades Schadler traveled the world as a correspondent and a ...
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." On January 3, 2019, a United States federal judge stated that
Johns Hopkins University Johns Hopkins University (Johns Hopkins, Hopkins, or JHU) is a private research university in Baltimore, Maryland. Founded in 1876, Johns Hopkins is the oldest research university in the United States and in the western hemisphere. It consi ...
,
Bristol-Myers Squibb The Bristol Myers Squibb Company (BMS) is an American multinational pharmaceutical company. Headquartered in New York City, BMS is one of the world's largest pharmaceutical companies and consistently ranks on the ''Fortune'' 500 list of the lar ...
and the Rockefeller Foundation must face a $1 billion lawsuit for their roles in a similar experiment affecting Guatemalans. 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 America's Frontline Doctors (AFLDS) is an American right-wing political organization. Affiliated with Tea Party Patriots co-founder Jenny Beth Martin and publicly led by Simone Gold, the group is opposed to measures intended to control the COV ...
, 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 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was the first public national body to shape bioethics policy in the United States. Formed in the aftermath of the Tuskegee Experiment scandal, the Com ...
and the
National Research Act The National Research Act was enacted by the 93rd United States Congress and signed into law by President Richard Nixon on July 12, 1974, after a series of congressional hearings on human-subjects research, directed by Senator Edward Kennedy. The ...
. The latter requires the establishment of institutional review boards (IRBs) at institutions receiving federal support (such as grants, cooperative agreements, or contracts). Foreign consent procedures can be substituted which offer similar protections and must be submitted to the '' Federal Register'' unless a statute or Executive Order requires otherwise. In the period following World War II, the revelation of
the Holocaust The Holocaust, also known as the Shoah, was the genocide of European Jews during World War II. Between 1941 and 1945, Nazi Germany and its collaborators systematically murdered some six million Jews across German-occupied Europe; ...
and related Nazi medical abuses brought about changes in international law. Western allies formulated the
Nuremberg Code The Nuremberg Code (german: Nürnberger Kodex) is a set of ethical research principles for human experimentation created by the court in '' U.S. v Brandt'', one of the Subsequent Nuremberg trials that were held after the Second World War. Tho ...
to protect the rights of research subjects. In 1964, the
World Medical Association The World Medical Association (WMA) is an international and independent confederation of free professional medical associations representing physicians worldwide. WMA was formally established on September 18, 1947 and has grown to 115 national ...
's
Declaration of Helsinki The Declaration of Helsinki (DoH, fi, Helsingin julistus, sv, Helsingforsdeklarationen) is a set of ethical principles regarding human experimentation developed originally in 1964 for the medical community by the World Medical Association (WMA) ...
specified that experiments involving human beings needed the "informed consent" of participants. 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. Writer James Jones said that the physicians were fixated on African-American sexuality. They believed that African-Americans willingly had sexual relations with infected persons (although no one had been told his diagnosis). 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.


Society and culture

;Comics * '' Truth: Red, White, and Black'' (published January–July 2003) is a seven-issue
Marvel Marvel may refer to: Business * Marvel Entertainment, an American entertainment company ** Marvel Comics, the primary imprint of Marvel Entertainment ** Marvel Universe, a fictional shared universe ** Marvel Music, an imprint of Marvel Comics * ...
comic book series inspired by the Tuskegee trials. Written as a prequel to the '' Captain America'' series, ''Truth: Red, White, and Black'' explores the exploitation of certain races for scientific research, as in the Tuskegee syphilis trials. ;Theater * David Feldshuh's stage play ''Miss Evers' Boys'' (1992), based on the history of the U.S. Public Health Service Syphilis Study at Tuskegee, was a runner-up for the 1992 Pulitzer Prize in drama. ;Music * The lyrics of Gil Scott-Heron's 33-second song, "Tuskeegee #626", featured on the ''
Bridges A bridge is a structure built to span a physical obstacle (such as a body of water, valley, road, or rail) without blocking the way underneath. It is constructed for the purpose of providing passage over the obstacle, which is usually someth ...
'' (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 Zeal & Ardor is a Swiss avant-garde metal band started and led by Manuel Gagneux, a Swiss-American musician who had previously created a chamber pop project called Birdmask. Formed in 2013, the band mixes sounds of African-American spirituals w ...
's song "Tuskegee", from the 2020 EP ''Wake of a Nation'', is about the Tuskegee Syphilis Study. * Jazz musician
Don Byron Donald Byron (born November 8, 1958) is an American composer and multi-instrumentalist. He primarily plays clarinet but has also played bass clarinet and saxophone in a variety of genres that includes free jazz and klezmer. Biography His mother w ...
's 1992 album '' Tuskegee Experiments'' was inspired by the study. *Atlanta rapper
JID Destin Choice Route (born October 31, 1990), better known by his stage name JID (also stylized J.I.D), is an American rapper. He is a part of the musical collective Spillage Village, founded by EarthGang in 2010, with Hollywood JB, JordxnBryant ...
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 False information, including intentional disinformation and conspiracy theories, about the scale of the COVID-19 pandemic and the origin, prevention, diagnosis, and treatment of the disease has been spread through social media, text messagin ...
.


See also


References


Further reading

*


Primary sources

* * * * * * * File:Tuskegeeletter.jpg, The Tuskegee Study Group Letter inviting subjects to receive "special treatment", actually a diagnostic lumbar puncture File:Tuskegee-syphilis-study autopsy-request.gif, Document from Tuskegee Syphilis Study, requesting that after test subjects die, an autopsy be performed, and the results sent to the
National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...
File:Tuskegee-syphilis-experiment draft report 1.gif, Draft report of study results up to 1949, page 1 File:Tuskegee-syphilis-experiment draft report 2.gif, Draft report of study results up to 1949, page 2 File:Tuskegee-syphilis-experiment table-subjects.gif, Table depicting number of subjects with syphilis and number of controlled non-syphilitic patients, and how many of the subjects have died during the experiments, 1969 File:Tuskegee-syphilis-study termination-memo.gif, Memo ordering the termination of the study


Secondary sources

* * * * DiAnni, Denisce (1993)
''The Deadly Deception'', PBS/WGBH Nova documentary video.
* * * * * *


External links

* (Archived.) * * * {{DEFAULTSORT:Tuskegee Study Of Untreated Syphilis In The African American Male African-American history of Alabama Clinical trials Health disasters in the United States History of racism in Alabama Human rights abuses in the United States Human subject research in the United States Medical ethics Medical scandals in the United States Race and health in the United States Social problems in medicine Syphilis Tuskegee University United States Public Health Service