The Tuskegee Syphilis Experiment
The Tuskegee Syphilis Experiment
"The United States government did something that was wrongdeeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens... clearly racist."
President Clinton's apology for the Tuskegee Syphilis Experiment to the eight remaining survivors, May 16, 1997
For forty years between 1932 and 1972, the U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for bad blood, their doctors had no intention of curing them of syphilis at all. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphilis which can include tumors, heart disease, paralysis, blindness, insanity, and death. As I see it, one of the doctors involved explained, we have no further interest in these patients until they die.
Taliaferro Clark, Head of the U.S. Public Health Service at the outset of the experiment.
Although the PHS touted the study as one of great scientific merit, from the outset its actual benefits were hazy. It took almost forty years before someone involved in the study took a hard and honest look at the end results, reporting that nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States. When the experiment was brought to the attention of the media in 1972, news anchor Harry Reasoner described it as an experiment that used human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone.
By the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis. How had these men been induced to endure a fatal disease in the name of science?
spinal tap, the PHS doctors misled them with a letter full of promotional hype: Last Chance for Special Free Treatment.
To persuade the community to support the experiment, one of The fact that autopsies the original doctors admitted it was necessary to carry on this study under the guise of a demonstration and provide would eventually be required treatment. At first, the men were prescribed the syphilis was also concealed. remedies of the daybismuth, neoarsphenamine, and mercury but in such small amounts that only 3 percent showed any improvement. These token doses of medicine were good public relations and did not interfere with the true aims of the study. Eventually, all syphilis treatment was replaced with pink medicineaspirin. To ensure that the men would show up for a painful and potentially dangerous spinal tap, the PHS doctors misled them with a letter full of promotional hype: Last Chance for Special Free Treatment. The fact that autopsies would eventually be required was also concealed. As a doctor explained, If the colored population becomes aware that accepting free hospital care means a post-mortem, every darky will leave Macon County... Even the Surgeon General of the United States participated in enticing the men to remain in the experiment, sending them certificates of appreciation after 25 years in the study.
The Veterans' Administration Hospital in Tuskegee, Alabama. Some of the study's post-mortem exams were conducted here.
One of the most chilling aspects of the experiment was how zealously the PHS kept these men from receiving treatment. When several nationwide campaigns to eradicate venereal disease came to Macon County, the men were prevented from participating. Even when penicillinthe first real cure for syphilis was discovered in the 1940s, the Tuskegee men were deliberately denied the medication. During World War II, 250 of the men registered for the draft and were consequently ordered to get treatment for syphilis, only to have the PHS exempt them. Pleased at their success, the PHS
representative announced: So far, we are keeping the known positive patients from getting treatment. The experiment continued in spite of the Henderson Act (1943), a public health law requiring testing and treatment for venereal disease, and in spite of the World Health Organization's Declaration of Helsinki (1964), which specified that informed consent was needed for experiments involving human beings.
Under the glare of publicity, the government ended their experiment, and for the first time provided the men with effective medical treatment for syphilis. Fred Gray, a lawyer who had previously defended Rosa Parks and Martin Luther King, filed a class action suit that provided a $10 million out-of-court settlement for the men and their families. Gray, however, named only whites and white organizations as defendants in the suit, portraying Tuskegee as a black and white case when it was in fact more complex than that black doctors and institutions had been involved from beginning to end.
The PHS did not accept the media's comparison of Tuskegee with the appalling experiments performed by Nazi doctors on their Jewish victims during World War II. Yet in addition to the medical and racist parallels, the PHS offered the same morally bankrupt defense offered at the Nuremberg trials: they claimed they were just carrying out orders, mere cogs in the wheel of the PHS bureaucracy, exempt from personal responsibility. The study's other justificationfor the greater good of scienceis equally spurious. Scientific protocol had been shoddy from the start. Since the men had in fact received some medication for syphilis in the beginning of the study, however inadequate, it thereby corrupted the outcome of a study of untreated syphilis.
In 1990, a survey found that 10 percent of African Americans believed that the U.S. government created AIDS as a plot to exterminate blacks, and another 20 percent could not rule out the possibility that this might be true. As preposterous and paranoid as this may sound, at one time the Tuskegee experiment must have seemed equally farfetched.
Who could imagine the government, all the way up to the Surgeon General of the United States, deliberately allowing a group of its citizens to die from a terrible disease for the sake of an ill-conceived experiment? In light of this and many other shameful episodes in our history, African Americans' widespread mistrust of the government and white society in general should not be a surprise to anyone.
1. All quotations in the article are from Bad Blood: The Tuskegee Syphilis Experiment, James H. Jones, expanded edition (New York: Free Press, 1993).
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The Study Begins In 1932, the Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis in hopes of justifying treatment programs for blacks. It was called the "Tuskegee Study of Untreated Syphilis in the Negro Male." The study initially involved 600 black men 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of patients' informed consent. Researchers told the men they were being treated for "bad blood," a local term used to describe several ailments, including syphilis, anemia, and fatigue. In truth, they did not receive the proper treatment needed to cure their illness. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance. Although originally projected to last 6 months, the study actually went on for 40 years. What Went Wrong? In July 1972, an Associated Press story about the Tuskegee Study caused a public outcry that led the Assistant Secretary for Health and Scientific Affairs to appoint an Ad Hoc Advisory Panel to review the study. The panel had nine members from the fields of medicine, law, religion, labor, education, health administration, and public affairs.
The panel found that the men had agreed freely to be examined and treated. However, there was no evidence that researchers had informed them of the study or its real purpose. In fact, the men had been misled and had not been given all the facts required to provide informed consent. The men were never given adequate treatment for their disease. Even when penicillin became the drug of choice for syphilis in 1947, researchers did not offer it to the subjects. The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even when this new, highly effective treatment became widely used. The Study Ends and Reparation Begins The advisory panel concluded that the Tuskegee Study was "ethically unjustified"--the knowledge gained was sparse when compared with the risks the study posed for its subjects. In October 1972, the panel advised stopping the study at once. A month later, the Assistant Secretary for Health and Scientific Affairs announced the end of the Tuskegee Study. In the summer of 1973, a class-action lawsuit was filed on behalf of the study participants and their families. In 1974, a $10 million out-of-court settlement was reached. As part of the settlement, the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services. In 1975, wives, widows and offspring were added to the program. In 1995, the program was expanded to include health as well as medical benefits. The Centers for Disease Control and Prevention was given responsibility for the program, where it remains today in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. The last study participant died in January 2004. The last widow receiving THBP benefits died in January 2009. There are 15 offspring currently receiving medical and health benefits.
Timeline
1895 Booker T. Washington at the Atlanta Cotton Exposition, outlines his dream for black economic development and gains support of northern philanthropists, including Julius Rosenwald (President of Sears, Roebuck and Company). 1900 Tuskegee educational experiment gains widespread support. Rosenwald Fund provides monies to develop schools, factories, businesses, and agriculture. 1915 Booker T. Washington dies; Robert Motin continues work. 1926 Health is seen as inhibiting development and major health initiative is started. Syphilis is seen as major health problem. Prevalence of 35 percent observed in reproductive age population.
1929 Aggressive treatment approach initiated with mercury and bismuth. Cure rate is less than 30 percent; treatment requires months and side effects are toxic, sometimes fatal. 1929 "Wall Street Crash"--economic depression begins. 1931 Rosenwald Fund cuts support to development projects. Clark and Vondelehr decide to follow men left untreated due to lack of funds in order to show need for treatment program. 1932 Follow-up effort organized into study of 399 men with syphilis and 201 without. The men would be given periodic physical assessments and told they were being treated. Motin agrees to support study if "Tuskegee Institute gets its full share of the credit" and black professionals are involved (Dr. Dibble and Nurse Rivers are assigned to study). 1934 First papers suggest health effects of untreated syphilis. 1936 Major paper published. Study criticized because it is not known if men are being treated. Local physicians asked to assist with study and not to treat men. Decision was made to follow the men until death. 1940 Efforts made to hinder men from getting treatment ordered under the military draft effort. 1945 Penicillin accepted as treatment of choice for syphilis. 1947 USPHS establishes "Rapid Treatment Centers" to treat syphilis; men in study are not treated, but syphilis declines. 1962 Beginning in 1947, 127 black medical students are rotated through unit doing the study. 1968 Concern raised about ethics of study by Peter Buxtun and others. 1969 CDC reaffirms need for study and gains local medical societies' support (AMA and NMA chapters officially support continuation of study). 1972 First news articles condemn studies. 1972 Study ends. 1973 Congress holds hearings and a class-action lawsuit is filed on behalf of the study participants. 1974 A $10 million out-of-court settlement is reached and the U.S. government promised to give lifetime medical benefits and burial services to all living participants. The Tuskegee Health Benefit Program (THBP) was established to provide these services. 1975 Wives, widows and offspring were added to the program. 1995 The program was expanded to include health as well as medical benefits. 1997 On May 16th President Clinton apologizes on behalf of the Nation. 1999 Tuskegee University National Center for Bioethics in Research and Health Care hosts 1st Annual Commemoration of the Presidential Apology. 2001 President's Council on Bioethics was established. 2004 CDC funds 10 million dollar cooperative agreement to continue work at Tuskegee University National Center for Bioethics in Research and Health Care. 2004 The last U.S. Public Health Service Syphilis Study at Tuskegee participant dies on January 16. 2006 Tuskegee University holds formal opening of Bioethics Center. 2007 CDC hosts Commemorating and Transforming the Legacy of the United States Public Health Service (USPHS) Syphilis Study at Tuskegee. 2009 The last widow receiving THBP benefits dies on January 27.
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On August 19, 1947, the judges of the American military tribunal in the case of the USA vs. Karl Brandt et. al. delivered their verdict. Before announcing the guilt or innocence of each defendant, they confronted the difficult question of medical experimentation on human beings. Several German doctors had argued in their own defense that their experiments differed little from previous American or German ones. Furthermore they showed that no international law or informal statement differentiated between legal and illegal human experimentation. This argument worried Drs. Andrew Ivy and Leo Alexander, American doctors who had worked with the prosecution during the trial. On April 17, 1947, Dr. Alexander submitted a memorandum to the United States Counsel for War Crimes which outlined six points defining legitimate research. The verdict of August 19 reiterated almost all of these points in a section entitled "Permissible Medical Experiments" and revised the original six points into ten. Subsequently, the ten points became known as the "Nuremberg Code." Although the code addressed the defense arguments in general, remarkably none of the specific findings against Brandt and his codefendants mentioned the code. Thus the legal force of the document was not well established. The uncertain use of the code continued in the half century following the trial when it informed numerous international ethics statements but failed to find a place in either the American or German national law codes. Nevertheless, it remains a landmark document on medical ethics and one of the most lasting products of the "Doctors Trial."
Permissible Medical Experiments The great weight of the evidence before us is to the effect that certain types of medical experiments on human beings, when kept within reasonably well-defined bounds, conform to the ethics of the medical profession generally. The protagonists of the practice of human experimentation justify their views on the basis that such experiments yield results for the good of society that are unprocurable by other methods or means of study. All agree, however, that certain basic principles must be observed in order to satisfy moral, ethical and legal concepts:
1. The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity. 2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature. 3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment. 4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury. 5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects. 6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment. 7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment. 9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible. 10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probably cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject. Of the ten principles which have been enumerated our judicial concern, of course, is with those requirements which are purely legal in nature--or which at least are so clearly related to matters legal that they assist us in determining criminal culpability and punishment. To go beyond that point would lead us into a field that would be beyond our sphere of competence. However, the point need not be labored. We find from the evidence that in the medical experiments which have been proved, these ten principles were much more frequently honored in their breach than in their observance. Many of the concentration camp inmates who were the victims of these atrocities were citizens of countries other than the German Reich. They were nonGerman nationals, including Jews and "asocial persons", both prisoners of war and civilians, who had been imprisoned and forced to submit to these tortures and barbarities without so much as a semblance of trial. In every single instance appearing in the record, subjects were used who did not consent to the experiments; indeed, as to some of the experiments, it is not even contended by the defendants that the subjects occupied the status of volunteers. In no case was the experimental subject at liberty of his own free choice to withdraw from any experiment. In many cases experiments were performed by unqualified persons; were conducted at random for no adequate scientific reason, and under revolting physical conditions. All of the experiments were conducted with unnecessary suffering and injury and but very little, if any, precautions were taken to protect or safeguard the human subjects from the possibilities of injury, disability, or death. In every one of the experiments the subjects experienced extreme pain or torture, and in most of them they suffered permanent injury, mutilation, or death, either as a direct result of the experiments or because of lack of adequate follow-up care. Obviously all of these experiments involving brutalities, tortures, disabling injury, and death were performed in complete disregard of international conventions, the laws and customs of war, the general principles of criminal law as derived from the criminal
laws of all civilized nations, and Control Council Law No. 10. Manifestly human experiments under such conditions are contrary to "the principles of the law of nations as they result from the usages established among civilized peoples, from the laws of humanity, and from the dictates of public conscience." Whether any of the defendants in the dock are guilty of these atrocities is, of course, another question. Under the Anglo-Saxon system of jurisprudence every defendant in a criminal case is presumed to be innocent of an offense charged until the prosecution, by competent, credible proof, has shown his guilt to the exclusion of every reasonable doubt. And this presumption abides with the defendant through each stage of his trial until such degree of proof has been adduced. A "reasonable doubt" as the name implies is one conformable to reason--a doubt which a reasonable man would entertain. Stated differently, it is that state of a case which, after a full and complete comparison and consideration of all the evidence, would leave an unbiased, unprejudiced, reflective person, charged with the responsibility for decision, in the state of mind that he could not say that he felt an abiding conviction amounting to a moral certainty of the truth of the charge. If any of the defendants are to be found guilty under counts two or three of the indictment it must be because the evidence has shown beyond a reasonable doubt that such defendant, without regard to nationality or the capacity in which he acted, participated as a principal in, accessory to, ordered, abetted, took a consenting part in, or was connected with plans or enterprises involving the commission of at least some of the medical experiments and other atrocities which are the subject matter of these counts. Under no other circumstances may he be convicted. Before examining the evidence to which we must look in order to determine individual culpability, a brief statement concerning some of the official agencies of the German Government and Nazi Party which will be referred to in this judgment seems desirable.
Sources: U.S. Holocaust Memorial Museum. Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10. Nuremberg, October 1946 - April 1949. Washington D.C.: U.S. G.P.O, 1949-1953.
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Nuremberg
Nuremberg is a city in the German state of Bavaria. During World War II, it was an important site for military production and Flossenbrg concentration camp was also located here. During 1939-1945 Nazis conducted many medical war crimes like, mass murder of concentration camp prisoners. Medical experiments were also performed on thousands of concentration camp prisoners without their consent and included deadly studies such as injecting people with gasoline and live viruses. This was against the ethics.
Nuremberg trials
These war crimes were brought before an international tribunal in the Nuremberg Trials and Nuremberg was chosen as the site for the trials. In December 1946, the War Crimes Tribunal at Nuremberg indicted 20 physicians and 3 administrators for their willing participation in the systematic torture, mutilation, and killing of prisoners in experiments. The Nuremberg Military Tribunals found that the defendants had:
Corrupted Repeatedly
the and
ethics
of
the violated
medical the
and rights
scientific of the
professions subjects
deliberately
The actions of these defendants were condemned as crimes against humanity. Sixteen of the twentythree physicians/administrators were found guilty and imprisoned, and seven were sentenced to death.
In the August 1947 verdict, the judges included a section called Permissible Medical Experiments. This section became known as the Nuremberg Code and was the first international code of research ethics.
The
Code
provides
ten
Directives
for
Human
Experimentation:
1.
Voluntary
consent
of
the
human
subject
is
absolutely
essential
2. in
The any
experiment other
must way
yield and
generalizable is not
knowledge random
that
could
not
be in
obtained nature
and
unnecessary
3.
Animal
experimentation
should
precede
human
experimentation
4.
All
unnecessary
physical
and
mental
suffering
and
injury
should
be
avoided
5.
No
experiment
should
be
conducted injury
if
there
is
reason will
to
believe
that
death
or
disabling
occur
6.
The
degree
of
risk
to of
subjects
should
never the
exceed
the
humanitarian problem
importance
7.
Risks
to
the
subjects
should
be
minimized
through
proper
preparations
8.
Experiments
should
only
be
conducted
by
scientifically
qualified
investigators
9.
Subjects
should
always
be
at
liberty
to
withdraw
from
experiments
10.
Investigators to
must that or
be
ready
to
end the
the
experiment is
at likely
any to the
stage result
if
there in
is
cause disability
believe
continuing
experiment to
injury, subject
death
Nuremberg code established the basic principles that must be observed in order to satisfy moral, ethical, and legal concepts in the conduct of human subject research. The Code has been the model for many professional and governmental codes since the 1950s.
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