Tuskegee Syphilis Study
Encyclopedia
The Tuskegee syphilis experiment (also known as the Tuskegee syphilis study or Public Health Service syphilis study) was an infamous clinical study
conducted between 1932 and 1972 in Tuskegee, Alabama
by the U.S. Public Health Service to study the natural progression of untreated syphilis
in poor, rural black men who thought they were receiving free health care from the U.S. government.
The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Investigators enrolled in the study a total of 600 impoverished, African-American sharecroppers from Macon County, Alabama; 399 who had previously contracted syphilis before the study began, and 201 without the disease. For participating in the study, the men were given free medical care, meals, and free burial insurance. They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for "bad blood," a local term used to describe several illnesses, including syphilis, anemia and fatigue.
The 40-year study was controversial for reasons related to ethical standards
; primarily because researchers knowingly failed to treat patients appropriately after the 1940s validation of penicillin
as an effective cure for the disease they were studying. Revelation of study failures by a whistleblower
led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent
(with exceptions possible for U.S. Federal agencies which can be kept secret by Executive Order), communication of diagnosis
, and accurate reporting of test results.
By 1947, penicillin had become the standard treatment for syphilis. Choices available to the doctors involved in the study might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study without treating any participants and withholding penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to others in the area. The study continued, under numerous US Public Health Service supervisors, until 1972, when a leak to the press eventually resulted in its termination. The victims of the study included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis
.
The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history," led to the 1979 Belmont Report
and the establishment of the Office for Human Research Protections
(OHRP). It also led to federal laws and regulations requiring Institutional Review Board
s for the protection of human subjects in studies involving human subjects. The Office for Human Research Protections (OHRP) manages this responsibility within the US Department of Health and Human Services (HHS).
The venereal disease section of the U.S. Public Health Service (PHS) formed a study group in 1932 at its national headquarters. Dr. Taliaferro Clark was credited with its origin. His initial goal was to follow untreated syphilis in a group of black men for 6 to 9 months, and then follow up with a treatment phase. When he understood the intention of other study members to use deceptive practices, Dr. Clark disagreed with the plan to conduct an extended study. He retired the year after the study began.
Representing the PHS, Clark had solicited the participation of the Tuskegee Institute (a historically black college (HBCU) that was well-known in Alabama) and also the inclusion of the Arkansas regional PHS office. Dr. Eugene Dibble, an African American doctor, was head of the John Andrew Hospital at the Tuskegee Institute. Dr. Oliver C. Wenger, a Caucasian, was director of the regional PHS Venereal Disease Clinic in Hot Springs, Arkansas
. He and his staff took a lead in developing study procedures.
Wenger and his staff played a critical role in developing early study protocols. Wenger continued to advise and assist the Tuskegee Study when it turned into a long-term, no-treatment observational study.
Dr. Raymond H. 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. For example, he decided to gain the "consent
" of the subjects for spinal taps
(to look for signs of neurosyphilis
) by depicting the diagnostic test as a "special free treatment". Vonderlehr retired as head of the venereal disease section in 1943, shortly after penicillin had first been shown to be a cure for syphilis.
Nurse Eunice Rivers, an African-American trained at Tuskegee Institute who worked at its affiliated John Andrew Hospital, was recruited at the start of the study. Dr. Vonderlehr was a strong advocate for her participation, as she was the direct link to the community. During the Great Depression
of the 1930s, the Tuskegee Study began by offering lower class African Americans, who often could not afford health care, the chance to join "Miss Rivers' Lodge". Patients were to 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.
As the study became long term, Nurse Rivers became the chief person with continuity. Unlike the changing state of national, regional and on-site PHS administrators, doctors, and researchers, Rivers stayed at Tuskegee University. She was the only study staff person to work with participants for the full 40 years. By the 1950s, Nurse Rivers had become pivotal to the study—her personal knowledge of the subjects enabled maintenance of long-term follow up. In the study's later years, Dr. John R. Heller led the national division.
By the late 1940s, doctors, hospitals and public health centers throughout the country routinely treated diagnosed syphilis with penicillin. In the period following World War II, the revelation of the Holocaust and related Nazi medical abuses
brought about changes in international law. Western allies formulated the Nuremberg Code
to protect the rights of research subjects. No one appeared to have reevaluated the protocols of the Tuskegee Study according to the new standards.
In 1972 the Tuskegee Study was brought to public and national attention by a whistleblower
, who gave information to the Washington Star
and the New York Times. Heller of PHS still defended the ethics
of the study, stating: "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."
A Norwegian study in 1928 had reported on the pathologic
manifestations of untreated syphilis in several hundred white males. This study is known as 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 Tuskegee study group decided to build on the Oslo work and perform a prospective study to complement it. In the earlier phases of the study this was not inherently unethical since there was nothing the investigators could do therapeutically at the time. Researchers could study the natural progression of the disease as long as they did not harm their subjects. They 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."
The US health service Tuskegee study began as a clinical trial
of the incidence of syphilis in the Macon County
population. Initially, subjects were studied for six to eight months and then treated with contemporary methods including Salvarsan
, mercurial
ointments, and bismuth
. These methods were, at best, mildly effective. The disadvantage that these treatments were all highly toxic was balanced by the fact that no other methods were known. The Tuskegee Institute participated in the study, as its representatives understood the intent was to benefit public health in the local poor population. The Tuskegee University-affiliated hospital effectively loaned the PHS its medical facilities and other predominantly black institutions and local black doctors participated as well. The Rosenwald Fund
, a major Chicago
-based philanthropy devoted to black education and community development in the South
, provided financial support to pay for the eventual treatment of the patients. Study researchers initially recruited 399 syphilitic Black men, and 201 healthy Black men as controls.
Continuing effects of the Stock Market Crash of 1929 and the beginning of the Great Depression
led the Rosenwald Fund to withdraw its offer of funding. Study directors issued a final report as they thought this might mean the end of the study once funding to buy medication for the treatment phase of the study was withdrawn.
Medical ethics
considerations were limited from the start and rapidly deteriorated. To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic spinal taps
, the doctors sent the 400 patients a misleading letter titled "Last Chance for Special Free Treatment" (see insert). The study also required all participants to undergo an autopsy
after death in order to receive funeral benefits. After penicillin was discovered as a cure, researchers continued to deny such treatment to many study participants. Many patients were lied to and given placebo
treatments so researchers could observe the full, long term progression of the fatal disease.
The Tuskegee Study published its first clinical data in 1934 and issued their first major report in 1936. This was prior to 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
, 250 of the subject men registered for the draft
. These men 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 attempted to prevent them from getting treatment, thus depriving them of chances for a cure. A PHS representative was quoted at the time as saying: "So far, we are keeping the known positive patients from getting treatment." Despite this, 96% of the 90 original test subjects reexamined in 1963 had received either arsenical or penicillin treatments from another health provider.
By 1947 penicillin had become standard therapy for syphilis. The US government sponsored several public health
programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate venereal disease came to Macon County, study researchers prevented their patients from participating.
By the end of the study in 1972, only 74 of the test subjects were alive. Of the original 399 men, 28 had died of syphilis, 100 were dead of related complications, 40 of their wives had been infected and 19 of their children were born with congenital syphilis
.
, Public Health Service doctors went even further. It was reported that from 1946 to 1948, American doctors deliberately infected prisoners, soldiers, and patients in a mental hospital with syphilis and, in some cases, gonorrhea, with the cooperation of some Guatemalan health ministries and officials. A total of 696 men and women were exposed to syphilis without the informed consent
of the subjects. When the subjects contracted the disease they were given antibiotics though it is unclear if all infected parties were cured.
Wellesley College's historian Susan Reverby discovered records of the experiment while examining archives of John Charles Cutler
, a government researcher involved in the now infamous Tuskegee study.
In October 2010, the U.S. formally apologized to Guatemala for conducting these experiments.
In 1966 Peter Buxtun
, a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases to express his concerns about the ethics
and morality
of the extended Tuskegee Study. The Center for Disease Control
(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 sought, and gained support for the continuation of the study, from local chapters of the National Medical Association
(representing African-American physicians) and the American Medical Association
(AMA).
In 1968 William Carter Jenkins, an African-American statistician in the PHS, part of the Department of Health, Education, and Welfare (HEW), founded and edited The Drum, a newsletter devoted to ending racial discrimination
in HEW. The cabinet-level department included the CDC. In The Drum, Jenkins called for an end to the Tuskegee 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
on July 25, 1972. It became front-page news in the New York Times the following day. Senator Edward Kennedy
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. It determined the study was medically unjustified and ordered its termination. As part of the settlement of a class action lawsuit subsequently filed by the NAACP
, the U.S. government paid $9 million (unadjusted for inflation) and agreed to provide free medical treatment to surviving participants and to surviving family members infected as a consequence of the study.
and created a commission
to study and write regulations governing studies involving human participants. On May 16, 1997, President Bill Clinton
formally apologized and held a ceremony for the Tuskegee study participants: "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 ... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist." Five of the eight remaining study survivors attended the White House ceremony.
The Tuskegee Syphilis Study significantly damaged the trust of the black community toward public health efforts in the United States. As a result, many distrust the medical community and are reluctant to participate in programs such as organ donation
. The study may also have contributed to the reluctance of many poor black people to seek routine preventive care. However, recent studies have challenged the degree to which knowledge of the Tuskegee experiments have kept black Americans from participating in medical research. Distrust of the government because of the study contributed to persistent rumors in the black community that the government was responsible for the HIV/AIDS crisis by introducing the virus to the black community.
After penicillin
was found to be an effective treatment for syphilis, the study continued for another 25 years without treating those suffering from the disease. After the study and its consequences became front-page news, it was ended in a day. 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
. The latter requires the establishment of institutional review boards (IRBs)
at institutions receiving federal support (such as grants, cooperative agreements, or contracts).
Clinical trial
Clinical trials are a set of procedures in medical research and drug development that are conducted to allow safety and efficacy data to be collected for health interventions...
conducted between 1932 and 1972 in Tuskegee, Alabama
Tuskegee, Alabama
Tuskegee is a city in Macon County, Alabama, United States. At the 2000 census the population was 11,846 and is designated a Micropolitan Statistical Area. Tuskegee has been an important site in various stages of African American history....
by the U.S. Public Health Service to study the natural progression of untreated syphilis
Syphilis
Syphilis is a sexually transmitted infection caused by the spirochete bacterium Treponema pallidum subspecies pallidum. The primary route of transmission is through sexual contact; however, it may also be transmitted from mother to fetus during pregnancy or at birth, resulting in congenital syphilis...
in poor, rural black men who thought they were receiving free health care from the U.S. government.
The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Investigators enrolled in the study a total of 600 impoverished, African-American sharecroppers from Macon County, Alabama; 399 who had previously contracted syphilis before the study began, and 201 without the disease. For participating in the study, the men were given free medical care, meals, and free burial insurance. They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for "bad blood," a local term used to describe several illnesses, including syphilis, anemia and fatigue.
The 40-year study was controversial for reasons related to ethical standards
Medical ethics
Medical ethics is a system of moral principles that apply values and judgments to the practice of medicine. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.-History:Historically,...
; primarily because researchers knowingly failed to treat patients appropriately after the 1940s validation of penicillin
Penicillin
Penicillin is a group of antibiotics derived from Penicillium fungi. They include penicillin G, procaine penicillin, benzathine penicillin, and penicillin V....
as an effective cure for the disease they were studying. Revelation of study failures by a whistleblower
Whistleblower
A whistleblower is a person who tells the public or someone in authority about alleged dishonest or illegal activities occurring in a government department, a public or private organization, or a company...
led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
(with exceptions possible for U.S. Federal agencies which can be kept secret by Executive Order), communication of diagnosis
Diagnosis
Diagnosis is the identification of the nature and cause of anything. Diagnosis is used in many different disciplines with variations in the use of logics, analytics, and experience to determine the cause and effect relationships...
, and accurate reporting of test results.
By 1947, penicillin had become the standard treatment for syphilis. Choices available to the doctors involved in the study might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study without treating any participants and withholding penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to others in the area. The study continued, under numerous US Public Health Service supervisors, until 1972, when a leak to the press eventually resulted in its termination. The victims of the study included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis
Congenital syphilis
Congenital syphilis is syphilis present in utero and at birth, and occurs when a child is born to a mother with secondary syphilis. Untreated syphilis results in a high risk of a bad outcome of pregnancy, including mulberry molars in the fetus. Syphilis can cause miscarriages, premature births,...
.
The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history," led to the 1979 Belmont Report
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 Subjects of Research, Report of the National Commission...
and the establishment of the Office for Human Research Protections
Office for human research protections
The Office for Human Research Protections is a small office within the United States Department of Health and Human Services that deals with ethical oversight of clinical research conducted by the department, mostly through the National Institutes of Health.The office's primary duty is the...
(OHRP). It also led to federal laws and regulations requiring Institutional Review Board
Institutional review board
An institutional review board , also known as an independent ethics committee or ethical review board , is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the...
s for the protection of human subjects in studies involving human subjects. The Office for Human Research Protections (OHRP) manages this responsibility within the US Department of Health and Human Services (HHS).
Study clinicians
Representing the PHS, Clark had solicited the participation of the Tuskegee Institute (a historically black college (HBCU) that was well-known in Alabama) and also the inclusion of the Arkansas regional PHS office. Dr. Eugene Dibble, an African American doctor, was head of the John Andrew Hospital at the Tuskegee Institute. Dr. Oliver C. Wenger, a Caucasian, was director of the regional PHS Venereal Disease Clinic in Hot Springs, Arkansas
Hot Springs, Arkansas
Hot Springs is the 10th most populous city in the U.S. state of Arkansas, the county seat of Garland County, and the principal city of the Hot Springs Metropolitan Statistical Area encompassing all of Garland County...
. He and his staff took a lead in developing study procedures.
Wenger and his staff played a critical role in developing early study protocols. Wenger continued to advise and assist the Tuskegee Study when it turned into a long-term, no-treatment observational study.
Dr. Raymond H. 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. For example, he decided to gain the "consent
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
" of the subjects for spinal taps
Lumbar puncture
A lumbar puncture is a diagnostic and at times therapeutic procedure that is performed in order to collect a sample of cerebrospinal fluid for biochemical, microbiological, and cytological analysis, or very rarely as a treatment to relieve increased intracranial pressure.-Indications:The...
(to look for signs of neurosyphilis
Neurosyphilis
Neurosyphilis is an infection of the brain or spinal cord caused by the bacterium Treponema pallidum. It usually occurs in people who have had untreated syphilis for many years, usually about 10 - 20 years after first infection.-Symptoms and signs:...
) by depicting the diagnostic test as a "special free treatment". Vonderlehr retired as head of the venereal disease section in 1943, shortly after penicillin had first been shown to be a cure for syphilis.
Nurse Eunice Rivers, an African-American trained at Tuskegee Institute who worked at its affiliated John Andrew Hospital, was recruited at the start of the study. Dr. Vonderlehr was a strong advocate for her participation, as she was the direct link to the community. During the Great Depression
Great Depression
The Great Depression was a severe worldwide economic depression in the decade preceding World War II. The timing of the Great Depression varied across nations, but in most countries it started in about 1929 and lasted until the late 1930s or early 1940s...
of the 1930s, the Tuskegee Study began by offering lower class African Americans, who often could not afford health care, the chance to join "Miss Rivers' Lodge". Patients were to receive free physical examinations at Tuskegee University
Tuskegee University
Tuskegee University is a private, historically black university located in Tuskegee, Alabama, United States. It is a member school of the Thurgood Marshall Scholarship Fund...
, free rides to and from the clinic, hot meals on examination days, and free treatment for minor ailments.
As the study became long term, Nurse Rivers became the chief person with continuity. Unlike the changing state of national, regional and on-site PHS administrators, doctors, and researchers, Rivers stayed at Tuskegee University. She was the only study staff person to work with participants for the full 40 years. By the 1950s, Nurse Rivers had become pivotal to the study—her personal knowledge of the subjects enabled maintenance of long-term follow up. In the study's later years, Dr. John R. Heller led the national division.
By the late 1940s, doctors, hospitals and public health centers throughout the country routinely treated diagnosed syphilis with penicillin. In the period following World War II, the revelation of the Holocaust and related Nazi medical abuses
Nazi human experimentation
Nazi human experimentation was a series of medical experiments on large numbers of prisoners by the Nazi German regime in its concentration camps mainly in the early 1940s, during World War II and the Holocaust. Prisoners were coerced into participating: they did not willingly volunteer and there...
brought about changes in international law. Western allies formulated the Nuremberg Code
Nuremberg Code
The Nuremberg Code is a set of research ethics principles for human experimentation set as a result of the Subsequent Nuremberg Trials at the end of the Second World War.-Background:...
to protect the rights of research subjects. No one appeared to have reevaluated the protocols of the Tuskegee Study according to the new standards.
In 1972 the Tuskegee Study was brought to public and national attention by a whistleblower
Whistleblower
A whistleblower is a person who tells the public or someone in authority about alleged dishonest or illegal activities occurring in a government department, a public or private organization, or a company...
, who gave information to the Washington Star
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. For most of that time, it was the city's newspaper of record, and the longtime home to columnist Mary McGrory and...
and the New York Times. Heller of PHS still defended the ethics
Medical ethics
Medical ethics is a system of moral principles that apply values and judgments to the practice of medicine. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.-History:Historically,...
of the study, stating: "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."
Study details
Pathology
Pathology is the precise study and diagnosis of disease. The word pathology is from Ancient Greek , pathos, "feeling, suffering"; and , -logia, "the study of". Pathologization, to pathologize, refers to the process of defining a condition or behavior as pathological, e.g. pathological gambling....
manifestations of untreated syphilis in several hundred white males. This study is known as 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 Tuskegee study group decided to build on the Oslo work and perform a prospective study to complement it. In the earlier phases of the study this was not inherently unethical since there was nothing the investigators could do therapeutically at the time. Researchers could study the natural progression of the disease as long as they did not harm their subjects. They 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."
The US health service Tuskegee study began as a clinical trial
Clinical trial
Clinical trials are a set of procedures in medical research and drug development that are conducted to allow safety and efficacy data to be collected for health interventions...
of the incidence of syphilis in the Macon County
Macon County, Alabama
Macon County is a county in the U.S. state of Alabama. Its name is in honor of Nathaniel Macon, a member of the United States Senate from North Carolina. Developed for cotton plantation agriculture in the nineteenth century, it is one of the counties in Alabama within the Black Belt of the South.As...
population. Initially, subjects were studied for six to eight months and then treated with contemporary methods including Salvarsan
Arsphenamine
Arsphenamine, also known as Salvarsan and 606, is a drug that was used beginning in the 1910s to treat syphilis and trypanosomiasis...
, mercurial
Mercury (element)
Mercury is a chemical element with the symbol Hg and atomic number 80. It is also known as quicksilver or hydrargyrum...
ointments, and bismuth
Bismuth
Bismuth is a chemical element with symbol Bi and atomic number 83. Bismuth, a trivalent poor metal, chemically resembles arsenic and antimony. Elemental bismuth may occur naturally uncombined, although its sulfide and oxide form important commercial ores. The free element is 86% as dense as lead...
. These methods were, at best, mildly effective. The disadvantage that these treatments were all highly toxic was balanced by the fact that no other methods were known. The Tuskegee Institute participated in the study, as its representatives understood the intent was to benefit public health in the local poor population. The Tuskegee University-affiliated hospital effectively loaned the PHS its medical facilities and other predominantly black institutions and local black doctors participated as well. The Rosenwald Fund
Rosenwald Fund
The Rosenwald Fund was established in 1917 by Julius Rosenwald and his family for "the well-being of mankind."...
, a major Chicago
Chicago
Chicago is the largest city in the US state of Illinois. With nearly 2.7 million residents, it is the most populous city in the Midwestern United States and the third most populous in the US, after New York City and Los Angeles...
-based philanthropy devoted to black education and community development in the South
Southern United States
The Southern United States—commonly referred to as the American South, Dixie, or simply the South—constitutes a large distinctive area in the southeastern and south-central United States...
, provided financial support to pay for the eventual treatment of the patients. Study researchers initially recruited 399 syphilitic Black men, and 201 healthy Black men as controls.
Continuing effects of the Stock Market Crash of 1929 and the beginning of the Great Depression
Great Depression
The Great Depression was a severe worldwide economic depression in the decade preceding World War II. The timing of the Great Depression varied across nations, but in most countries it started in about 1929 and lasted until the late 1930s or early 1940s...
led the Rosenwald Fund to withdraw its offer of funding. Study directors issued a final report as they thought this might mean the end of the study once funding to buy medication for the treatment phase of the study was withdrawn.
Medical ethics
Medical ethics
Medical ethics is a system of moral principles that apply values and judgments to the practice of medicine. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.-History:Historically,...
considerations were limited from the start and rapidly deteriorated. To ensure that the men would show up for the possibly dangerous, painful, diagnostic, and non-therapeutic spinal taps
Lumbar puncture
A lumbar puncture is a diagnostic and at times therapeutic procedure that is performed in order to collect a sample of cerebrospinal fluid for biochemical, microbiological, and cytological analysis, or very rarely as a treatment to relieve increased intracranial pressure.-Indications:The...
, the doctors sent the 400 patients a misleading letter titled "Last Chance for Special Free Treatment" (see insert). The study also required all participants to undergo an autopsy
Autopsy
An autopsy—also known as a post-mortem examination, necropsy , autopsia cadaverum, or obduction—is a highly specialized surgical procedure that consists of a thorough examination of a corpse to determine the cause and manner of death and to evaluate any disease or injury that may be present...
after death in order to receive funeral benefits. After penicillin was discovered as a cure, researchers continued to deny such treatment to many study participants. Many patients were lied to and given placebo
Placebo
A placebo is a simulated or otherwise medically ineffectual treatment for a disease or other medical condition intended to deceive the recipient...
treatments so researchers could observe the full, long term progression of the fatal disease.
The Tuskegee Study published its first clinical data in 1934 and issued their first major report in 1936. This was prior to 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
World War II
World War II, or the Second World War , was a global conflict lasting from 1939 to 1945, involving most of the world's nations—including all of the great powers—eventually forming two opposing military alliances: the Allies and the Axis...
, 250 of the subject men registered for the draft
Conscription
Conscription is the compulsory enlistment of people in some sort of national service, most often military service. Conscription dates back to antiquity and continues in some countries to the present day under various names...
. These men 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 attempted to prevent them from getting treatment, thus depriving them of chances for a cure. A PHS representative was quoted at the time as saying: "So far, we are keeping the known positive patients from getting treatment." Despite this, 96% of the 90 original test subjects reexamined in 1963 had received either arsenical or penicillin treatments from another health provider.
By 1947 penicillin had become standard therapy for syphilis. The US government sponsored several public health
Public health
Public health is "the science and art of preventing disease, prolonging life and promoting health through the organized efforts and informed choices of society, organizations, public and private, communities and individuals" . It is concerned with threats to health based on population health...
programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate venereal disease came to Macon County, study researchers prevented their patients from participating.
By the end of the study in 1972, only 74 of the test subjects were alive. Of the original 399 men, 28 had died of syphilis, 100 were dead of related complications, 40 of their wives had been infected and 19 of their children were born with congenital syphilis
Congenital syphilis
Congenital syphilis is syphilis present in utero and at birth, and occurs when a child is born to a mother with secondary syphilis. Untreated syphilis results in a high risk of a bad outcome of pregnancy, including mulberry molars in the fetus. Syphilis can cause miscarriages, premature births,...
.
Non-consensual experiments in Guatemala
In October 2010 it was revealed that in GuatemalaGuatemala
Guatemala is a country in Central America bordered by Mexico to the north and west, the Pacific Ocean to the southwest, Belize to the northeast, the Caribbean to the east, and Honduras and El Salvador to the southeast...
, Public Health Service doctors went even further. It was reported that from 1946 to 1948, American doctors deliberately infected prisoners, soldiers, and patients in a mental hospital with syphilis and, in some cases, gonorrhea, with the cooperation of some Guatemalan health ministries and officials. A total of 696 men and women were exposed to syphilis without the informed consent
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
of the subjects. When the subjects contracted the disease they were given antibiotics though it is unclear if all infected parties were cured.
Wellesley College's historian Susan Reverby discovered records of the experiment while examining archives of John Charles Cutler
John Charles Cutler
John Charles Cutler, M.D. was a senior surgeon, and the acting chief of the venereal disease program in the United States Public Health Service....
, a government researcher involved in the now infamous Tuskegee study.
In October 2010, the U.S. formally apologized to Guatemala for conducting these experiments.
Study termination
Peter Buxtun
Peter Buxtun is a former employee of the United States Public Health Service who became known as the whistleblower responsible for ending the Tuskegee syphilis experiment....
, a PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases to express his concerns about the ethics
Ethics
Ethics, also known as moral philosophy, is a branch of philosophy that addresses questions about morality—that is, concepts such as good and evil, right and wrong, virtue and vice, justice and crime, etc.Major branches of ethics include:...
and morality
Morality
Morality is the differentiation among intentions, decisions, and actions between those that are good and bad . A moral code is a system of morality and a moral is any one practice or teaching within a moral code...
of the extended Tuskegee Study. The Center for Disease Control
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention are a United States federal agency under the Department of Health and Human Services headquartered in Druid Hills, unincorporated DeKalb County, Georgia, in Greater Atlanta...
(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 sought, and gained support for the continuation of the study, from local chapters of the National Medical Association
National Medical Association
The National Medical Association is the largest and oldest national organization representing African American physicians and their patients in the United States...
(representing African-American physicians) and the American Medical Association
American Medical Association
The American Medical Association , founded in 1847 and incorporated in 1897, is the largest association of medical doctors and medical students in the United States.-Scope and operations:...
(AMA).
In 1968 William Carter Jenkins, an African-American statistician in the PHS, part of the Department of Health, Education, and Welfare (HEW), founded and edited The Drum, a newsletter devoted to ending racial discrimination
Discrimination
Discrimination is the prejudicial treatment of an individual based on their membership in a certain group or category. It involves the actual behaviors towards groups such as excluding or restricting members of one group from opportunities that are available to another group. The term began to be...
in HEW. The cabinet-level department included the CDC. In The Drum, Jenkins called for an end to the Tuskegee 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
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. For most of that time, it was the city's newspaper of record, and the longtime home to columnist Mary McGrory and...
on July 25, 1972. It became front-page news in the New York Times the following day. Senator Edward Kennedy
Ted Kennedy
Edward Moore "Ted" Kennedy was a United States Senator from Massachusetts and a member of the Democratic Party. Serving almost 47 years, he was the second most senior member of the Senate when he died and is the fourth-longest-serving senator in United States history...
called Congressional hearings, at which Buxtun and HEW officials testified. As a result of public outcry the CDC and PHS appointed an ad hoc
Ad hoc
Ad hoc is a Latin phrase meaning "for this". It generally signifies a solution designed for a specific problem or task, non-generalizable, and not intended to be able to be adapted to other purposes. Compare A priori....
advisory panel to review the study. It determined the study was medically unjustified and ordered its termination. As part of the settlement of a class action lawsuit subsequently filed by the NAACP
National Association for the Advancement of Colored People
The National Association for the Advancement of Colored People, usually abbreviated as NAACP, is an African-American civil rights organization in the United States, formed in 1909. Its mission is "to ensure the political, educational, social, and economic equality of rights of all persons and to...
, the U.S. government paid $9 million (unadjusted for inflation) and agreed to provide free medical treatment to surviving participants and to surviving family members infected as a consequence of the study.
Aftermath
In 1974 Congress passed the National Research ActNational Research Act
The National Research Act was enacted by the 93rd United States Congress. It created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to oversee and regulate the use of human experimentation in medicine. It was partly a response to the infamous...
and created a commission
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....
to study and write regulations governing studies involving human participants. On May 16, 1997, President Bill Clinton
Bill Clinton
William Jefferson "Bill" Clinton is an American politician who served as the 42nd President of the United States from 1993 to 2001. Inaugurated at age 46, he was the third-youngest president. He took office at the end of the Cold War, and was the first president of the baby boomer generation...
formally apologized and held a ceremony for the Tuskegee study participants: "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 ... To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist." Five of the eight remaining study survivors attended the White House ceremony.
The Tuskegee Syphilis Study significantly damaged the trust of the black community toward public health efforts in the United States. As a result, many distrust the medical community and are reluctant to participate in programs such as organ donation
Organ donation
Organ donation is the donation of biological tissue or an organ of the human body, from a living or dead person to a living recipient in need of a transplantation. Transplantable organs and tissues are removed in a surgical procedure following a determination, based on the donor's medical and...
. The study may also have contributed to the reluctance of many poor black people to seek routine preventive care. However, recent studies have challenged the degree to which knowledge of the Tuskegee experiments have kept black Americans from participating in medical research. Distrust of the government because of the study contributed to persistent rumors in the black community that the government was responsible for the HIV/AIDS crisis by introducing the virus to the black community.
Ethical implications
Penicillin
Penicillin is a group of antibiotics derived from Penicillium fungi. They include penicillin G, procaine penicillin, benzathine penicillin, and penicillin V....
was found to be an effective treatment for syphilis, the study continued for another 25 years without treating those suffering from the disease. After the study and its consequences became front-page news, it was ended in a day. The aftershocks of this study, and other human experiments in the United States
Human experimentation in the United States
There have been numerous experiments performed on human test subjects in the United States that have been considered unethical, and were often performed illegally, without the knowledge, consent, or informed consent of the test subjects....
, 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
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....
and the National Research Act
National Research Act
The National Research Act was enacted by the 93rd United States Congress. It created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to oversee and regulate the use of human experimentation in medicine. It was partly a response to the infamous...
. The latter requires the establishment of institutional review boards (IRBs)
Institutional review board
An institutional review board , also known as an independent ethics committee or ethical review board , is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the...
at institutions receiving federal support (such as grants, cooperative agreements, or contracts).
In popular culture
- Dr. David FeldshuhDavid FeldshuhDavid Feldshuh is a physician, playwright, and author. His 1992 play Miss Evers' Boys, based on the Tuskegee syphilis experiment, was a finalist for the 1992 Pulitzer Prize for Drama...
wrote a stage play in 1992 based on the history of the Tuskegee study, titled Miss Evers' BoysMiss Evers' BoysMiss Evers' Boys is a 1997 HBO television film starring Alfre Woodard and Laurence Fishburne, based on the true story of the decades-long Tuskegee experiment. It was directed by Joseph Sargent and adapted from the 1992 stage play written by David Feldshuh...
. It was a runner-up for the 1992 Pulitzer PrizePulitzer PrizeThe Pulitzer Prize is a U.S. award for achievements in newspaper and online journalism, literature and musical composition. It was established by American publisher Joseph Pulitzer and is administered by Columbia University in New York City...
in dramaDramaDrama is the specific mode of fiction represented in performance. The term comes from a Greek word meaning "action" , which is derived from "to do","to act" . The enactment of drama in theatre, performed by actors on a stage before an audience, presupposes collaborative modes of production and a...
. In 1997 it was adapted for an HBO made-for-TV movie. The HBO adaptation was nominated for eleven Emmy AwardEmmy AwardAn Emmy Award, often referred to simply as the Emmy, is a television production award, similar in nature to the Peabody Awards but more focused on entertainment, and is considered the television equivalent to the Academy Awards and the Grammy Awards .A majority of Emmys are presented in various...
s, and won in four categories. - Don ByronDon ByronDon Byron is an American composer and multi-instrumentalist. He primarily plays clarinet, but has also used bass clarinet and saxophones....
's debut album, Tuskegee ExperimentsTuskegee ExperimentsTuskegee Experiments is the first album as leader by jazz clarinettist Don Byron. Its title refers to the Tuskegee syphilis experiment — the notorious medical experiment conducted around Tuskegee, Alabama, lasting from 1932 to 1972, in which 400 subjects, mainly poor, black sharecroppers,...
, is named after the study. - Marvel ComicsMarvel ComicsMarvel Worldwide, Inc., commonly referred to as Marvel Comics and formerly Marvel Publishing, Inc. and Marvel Comics Group, is an American company that publishes comic books and related media...
' limited seriesLimited seriesA limited series is a comic book series with a set number of installments. A limited series differs from an ongoing series in that the number of issues is determined before production and it differs from a one shot in that it is composed of multiple issues....
Truth: Red, White & BlackTruth: Red, White & BlackTruth: Red, White & Black is a seven-issue comic book limited series written by Robert Morales and drawn by Kyle Baker, published by Marvel Comics.- Synopsis :...
reinterpreted the Tuskegee Experiment as part of the Weapon PlusWeapon PlusWeapon Plus is a fictional clandestine program that appears in books published by Marvel Comics. It was created by Grant Morrison during his run in New X-Men. The program's purpose is the creation of supersoldiers intended to fight the wars of the future, especially a Mutant-Human war...
program. - Carlo Boccadoro's composition Bad BloodBad BloodBad Blood is an English phrase referring to enmity between two people or groups.The phrase may also refer to:-In film and television:* Bad Blood , starring Jack Thompson, about mass murderer Stanley Graham...
, takes inspiration from the tragic facts and discrimination related to the study. - The book, The Immortal Life of Henrietta LacksThe Immortal Life of Henrietta LacksThe Immortal Life of Henrietta Lacks is a non-fiction book by American author Rebecca Skloot. It is about Henrietta Lacks and the immortal cell line, known as HeLa, that came from her cervical cancer cells in 1951. The book is notable for its accessible science writing and dealing with ethical...
briefly discusses the study, when discussing African Americans and science. - In the movie Half BakedHalf BakedHalf Baked is a 1998 stoner comedy film starring Dave Chappelle, Jim Breuer, Harland Williams and Guillermo Díaz. The movie was directed by Tamra Davis, and co-written by star Dave Chappelle and Neal Brennan...
, Dave ChappelleDave ChappelleDavid Khari Webber "Dave" Chappelle is an American comedian, screenwriter, television/film producer, actor, and artist. Chappelle began his film career in the film Robin Hood: Men in Tights in 1993 and continued to star in minor roles in the films The Nutty Professor, Con Air, and Blue Streak. His...
's character Thurgood Jenkins states that his grandfather was a participant in the Tuskegee Experiment.
See also
- Shiloh Missionary Baptist ChurchShiloh Missionary Baptist ChurchThe Shiloh Missionary Baptist Church and Rosenwald School is a historic Missionary Baptist Church and Rosenwald School located at 7 Shiloh Road, off of Alabama Highway 80, near Notasulga, Alabama in Macon County, Alabama. The property contains two buildings that are both associated with the...
- Human experimentation in the United StatesHuman experimentation in the United StatesThere have been numerous experiments performed on human test subjects in the United States that have been considered unethical, and were often performed illegally, without the knowledge, consent, or informed consent of the test subjects....
- Guatemala syphilis experimentGuatemala syphilis experimentThe syphilis experiments in Guatemala were United States-led human experiments conducted in Guatemala from 1946 to 1948, during the administration of President Truman and President Juan José Arévalo with the cooperation of some Guatemalan health ministries and officials...
- Human subject research
- World Medical AssociationWorld Medical AssociationThe World Medical Association is an international and independent confederation of free professional Medical Associations, therefore representing physicians worldwide...
- International Conference on Harmonisation for Registration of Pharmaceuticals
- Declaration of GenevaDeclaration of GenevaThe Declaration of Geneva was adopted by the General Assembly of the World Medical Association at Geneva in 1948 and amended in 1968, 1984, 1994, 2005 and 2006. It is a declaration of physicians' dedication to the humanitarian goals of medicine, a declaration that was especially important in view...
- Declaration of HelsinkiDeclaration of HelsinkiThe Declaration of Helsinki is a set of ethical principles regarding human experimentation developed for the medical community by the World Medical Association . It is widely regarded as the cornerstone document of human research ethics...
- Operation WhitecoatOperation WhitecoatOperation Whitecoat was the name given to a medical research program carried out by the US Army at Fort Detrick, Maryland during the period 1954–1973. The program involved conducting medical research using volunteer enlisted personnel who eventually became nicknamed "White Coats"...
- Frank Zappa's album Thing-Fish
Secondary Sources
- The Deadly Deception, by Denisce DiAnni, PBS/WGBH NOVA documentary video, 1993.
- Jean Heller (Associated Press), "Syphilis Victims in the U.S. Study Went Untreated for 40 Years" New York Times, July 26, 1972: 1, 8.
External links
- CDC Tuskegee Syphilis Study Page
- Excellent review of the TSS
- Patient medical files held at National Archives and Records Administration Southeast Region, Morrow, GA
- Mary Harper; Leader in Minority Health
- Interview at Democracy Now!Democracy Now!Democracy Now! and its staff have received several journalism awards, including the Gracie Award from American Women in Radio & Television; the George Polk Award for its 1998 radio documentary Drilling and Killing: Chevron and Nigeria's Oil Dictatorship, on the Chevron Corporation and the deaths of...
: Ogg Vorbis recording, interview transcript - Interview at NPRNPRNPR, formerly National Public Radio, is a privately and publicly funded non-profit membership media organization that serves as a national syndicator to a network of 900 public radio stations in the United States. NPR was created in 1970, following congressional passage of the Public Broadcasting...
: 'Medical Apartheid' Tracks History of Abuses - IHT book review: Book Review: Medical Apartheid
- Tuskegee Syphilis Study article, Encyclopedia of Alabama
- New York Times review of HBO movie "Miss Evers' BoysMiss Evers' BoysMiss Evers' Boys is a 1997 HBO television film starring Alfre Woodard and Laurence Fishburne, based on the true story of the decades-long Tuskegee experiment. It was directed by Joseph Sargent and adapted from the 1992 stage play written by David Feldshuh...
" - Susan Reverby, author of Examining Tuskegee - video interview by Democracy Now!Democracy Now!Democracy Now! and its staff have received several journalism awards, including the Gracie Award from American Women in Radio & Television; the George Polk Award for its 1998 radio documentary Drilling and Killing: Chevron and Nigeria's Oil Dictatorship, on the Chevron Corporation and the deaths of...