Bad Blood: The Tuskegee Syphilis Experiment
Author: James H. Jones
(New York: The Free Press, 1993)
The "Tuskegee Syphilis Experiment" is not only a part of American medical history, but also American history that most people would like to forget. The experiment spanned nearly half a century (1932 &emdash; 1972) but the ramifications of the experiment will last a lifetime.
In 1932 the first phase of the experiment began and the tiny sharecropper county of Macon County, Alabama was turned into a virtual laboratory. This was done for the sole purpose of studying the effects of untreated syphilis on the black male population.
The study was spawned from a similar experiment conducted on white males in Oslo, Norway and the conception that syphilis took a different path of destruction in whites than in their black counterparts. The reason for the exclusion of women in the experiment was due to the fact that in most cases, due to the orientation of their reproductive organs, women could not give an accurate date in which the disease began to manifest itself.
The experiment was conducted in conjunction with the Tuskegee Institute (now the Tuskegee University), and the blessings of the local and state board of health, and the willing participants of the local community. From the beginning the experiment was marred by the governments willingness to pray on the indigent, ignorance, and trust of its citizens, its use of deceit to lure subjects, the withholding of treatment to the subjects and one fatal flaw: the administering of small amounts of treatment to some patients. These flaws are what inevitably led to Peter Buxtuns uncovering of the experiment (and with the help of the Associated Press) its termination, and its treatment and compensation to its survivors.
The major result of this experiment was the complete revamping of the regulations of human experimentation. Less notably, but equally as important is the attitude of mistrust that developed throughout the black population towards the medical profession as a whole, and predominantly the public health care.
The following chapter summaries give an overview of the experiment from its inception in the early 1930s to its demise in the early 1970s.
CHAPTER 1: "A Moral Astigmatism"
A basic overview of the experiment, from its inception in 1932 to the controversy surrounding its discovery in 1972. The Public Health Service (PHS) conducted a study of "the effects of untreated syphilis on black men in Macon County, Alabama [The purpose of the study was] to learn more about the serious complications that result during the final phase of the disease." The study involved 399 men who were in the late stages of syphilis and 201 who were controls and did not have the disease; all the participants were black men. Most subjects were poor and illiterate, and the PHS offered them incentives to participate, such as hot dinners on exam days, free treatment for minor ailments, and a guaranteed burial stipend. Although the PHS said that participants were informed of what the study was about, many actual subjects denied ever being told what was happening &emdash; they only knew that they had "bad blood."
The treatments for syphilis in the early 1930s offered more potential harm than benefit for the patient so little harm was done by not treating the men in the study. After 1955, penicillin was introduced as a syphilis good treatment, but was denied to the participants because treatment at a late stage would be harmful; a vigorous therapy after so many years of no treatment at all could cause allergic drug reactions. Ultimately, Americans saw the study as a need to protect society from scientific pursuits that ignored human values.
In order to understand the moral questions surrounding this experiment, the historical and institutional context must be understood, so the development of the public health movement is an important part in understanding how such an experiment could happen.
CHAPTER 2: "A Notoriously Syphilis-Soaked Race"
Because nineteenth century physicians had their own individual understandings of disease, each claiming to know what caused them and how to treat them on a case to case scenario, different explanations for clinical phenomena occurred. The germ theory was in its early years, and differences in natural immunity, severity of various diseases, and susceptibility frequently separated the races. The socioeconomic conditions in which blacks lived seemed to facilitate the spread of disease and syphilis was looked upon as the "quintessential black disease." The question was whether blacks were the passive victims of a cruel environment or if they earned their illnesses as recompense for their lifestyles, and this idea of personal responsibility affected how physicians looked upon and treated black syphilitics. Most slaves received the same treatment as their masters as a matter of economic concern even though syphilis was thought to affect blacks differently. From a study conducted in 1921 at Johns Hopkins, bone and cardiovascular syphilis was more common in blacks and whites suffered higher rates of neural syphilis in the tertiary stage.
CHAPTER 3: "Disease Germs Are the Most Democratic
Creatures in the World"
After the germ theory was accepted by scientific medicine, controlling disease became something within our reach; "to protect whites [we] also had to help blacks." Emphasis on preventative medicine, education, and sanitation was added to the ways of combating epidemics. The environment became the determinant of health so "physical inferiority " of blacks could not be the reason for high mortality rates anymore. Health officials still persisted that racial differences did exist in susceptibility, severity, and complications of disease, which meant that more effort had to be taken to improve black environments and medical care. The public health movement until the 1920s and 1930s did not reach many parts of the South so black health, instead of the environment, was still an issue in the South.
CHAPTER 4: "Holding High Wassermann in the
The microbe that causes syphilis was found in 1905 and in 1907 the Wassermann test, a pigment fixation test was developed to diagnose syphilis and assess the progress of treatment. Early treatments of syphilis were thought to be successful, but it was soon found that treatment over a prolonged period was the key. So the problem now became how to keep people in treatment long enough and how treatment could be given to the lower classes of people not being reached by the social hygiene movement. Treatment was the main focus of the social hygiene movement and many venereal disease control clinics were set up in health departments to center on treating the poor. This was very successful at first, which eventually led to cutting the funding to these programs because they had essentially obtained their goal. Sex education, not treatment, became the principal activity of these clinics due to the lack of funds. Free clinics were set up in urban areas that helped some of the population, but the big funding came from the Rosenwald Fund in the 1930s. A special interest was taken in "improving race relations and securing wider opportunities for blacks." The employment of more black health workers became one of the Funds aims. The prevalence of syphilis in rural areas was still very high as was found in the Wassermann survey, so some action had to be taken to help improve the health of all blacks, urban and rural. The best way to stop inadequate treatment and re-infection was to test groups of blacks in different communities and find a way to treat them. Instead of focusing on sex education, health surveys, scientific research, and treatment demonstrations were used. Syphilis control in different rural areas was under way with proposals to the Surgeon General about where and how to conduct this new program.
Chapter 5: "The Dr. Aint Taking Sticks"
Chapter 5 is primarily a setup chapter for the rest of the book. It explains the cultural and economical make-up of Macon County, Alabama in the 1930s as one of ignorance and indigence. It also explains that these reasons along with its large colored population are why it was chosen as part of the original Wassermann Survey. The results of the survey, and the reason for the extended experiment taking place only in Macon County, was that an astounding 36% of those tested came back positive for syphilis (Albemarle County, Virginia had only 7%). This was shocking to those running the experiment, however those at Tuskegee Institute thought that it was more like 50%, because it was much higher than any other county in the survey.
Chapter 6: "Buying Ear Muffs for the Hottentots"
This chapter dealt with the implementation of medical observers by the Rosenwald Fund to report the medical conditions in Macon County during the experiment. Dr. H.L. Harris, Jr., a black physician, was the Rosenwald Funds first inspector to visit Macon County. Dr. Harris reported on the grueling work schedule and poor clinical conditions encountered by the doctors involved in the experiment. Doctors worked 9-5 everyday with no time allotted for lunch. The doctors worked in an old Negro school where Harris proclaimed "satisfactory physical examinations were of course out the question" (Jones 79). Harris also reported on the use of mercury as a means of treatment on infected patients and whether or not they were receiving the proper dosages of the medicine. These dosages of mercury in essence contaminated the experiment, since the experiment was a test of the effects of untreated syphilis on the Negro male. Overall, Dr. Harris opinion on the entire experiment was as follows "To the extent that the demonstration has caused county, state and federal authorities to take an interest in health problems of a very backward Negro community, the effort is very much worthwhile" (Jones 80). From the findings of the experiments conducted from the Rosenwald Fund, the PHS (Public Health Service) created new services to test and treat the public health of blacks and whites alike.
Chapter 7: "It Will Either Cover Us with Mud or Glory"
Chapter seven discussed the origin of the Tuskegee Study of Untreated Syphilis in the Negro Male. The Tuskegee Study was a result of the Rosenwald Fund withdrawing its financial support from the syphilis control demonstrations. Dr. Taliaferro Clark was the founder of the Tuskegee Study. Macon County held the highest rate of syphilis in the South, 35%, making it the most appropriate place to conduct the study. The Macon County study would be compared to the study of untreated syphilis conducted on white males in Oslo, Norway between the years of 1891-1910. The study was conducted as a hope to find the origin of the disease. Individuals with untreated syphilis could reveal the evolution of the disease much more readily than those that had been treated. It was hoped that the data compiled in the experiment would generate attention for the Negro community, thus enacting the establishment of Negro health programs, which were badly needed.
An interesting point discussed in this chapter was the fact that there was no system of ethics/standards held by physicians on human experimentation during the 1930s to require doctors to respect human/patients rights. The PHS mandated that every patient found to have syphilis would have to be treated-thus enacting the "fatal flaw" of the experiment. With no control group, the experiments results were invalid. Everyone involved in the experiment knew that the study would generate attention covering them with "mud or glory" based on the opinion of the public majority.
Chapter 8: "Last Chance for Special Treatment"
This chapter dealt with how the PHS planned to recruit people to participate in the experiment. Patients were not told that they were being tested for syphilis, rather they were told they were being tested for "bad blood." The plan had worked before with the Rosenwald Fund and it worked again with the Tuskegee Study. "Free blood tests," packed people into clinics as planned since most people wanted to know if their blood was deemed "good" or "bad." If a person was found to test positive for syphilis they were notified by mail to report back for further treatments for "bad blood." The neurological effects of syphilis became the main focus of the experiment from this point forward. The method of testing for neurological problems was by the means of spinal taps. Doctors conducting the experiment felt that if the patients knew what was planned for them concerning the spinal tap, they would not return to the hospital, thus the experiment would lose a major factor, this being the patients. The doctors devised a plan to make sure the patients returned by compiling a letter that offered "Last Chance for Special Free Treatment." It told the men that their "special" treatment could require them to stay overnight at the hospital, but was overshadowed by the fact that free meals and shelter would be provided. In a poor mans eyes, free meals and a warm bed convinced many to meet Nurse Rivers on the slated day of their particular testing.
Spinal taps were very risky and could produce atrocious side effects. Everything from acute headaches to partial paralysis could result from the testing. The doctors desire for experimentation data overrode their duty to inform the patients of the procedures and possible side effects. The doctors moral responsibility was lost.
Chapter 9: "Bringing Them to Autopsy"
Autopsies of syphilitics were seen as an excellent means of providing data for the scientific community that would be seen as the most reliable. Nurse Rivers was implemented as the go between among the doctors and patients.
Nurse Rivers had to convince patients families upon their death to allow their bodies to be sent to the hospital for autopsies. Her means of attack was that she told the families that the autopsy needed to be conducted so no one else in the family would die of the same disease. Nurse Rivers compiled lists of patients who were defined as being near death. She would keep in contact with them and as death approached tried to convince them that the most comfortable setting in which to die would be the hospital. She did this as a means of keeping her job, for some members of the experiment did not see her position as a crucial "go between" among the doctors and patients, and not worthy of employment.
It was important to perform clean, non-destructive autopsies. Nurse Rivers informed the doctors that if they disfigured a body they would never receive another one. The black community would not allow their dead to be mangled by the medical community.
Death opened a new door to test the effects of tertiary syphilis, specifically on the cardiovascular and neurological systems. The incentive for performing the autopsy was that the patient would receive a proper burial paid for by the experiment.
Chapter 10: "The Joy of My Life"
Chapter 10 describes the crucial role that Nurse Rivers played in the Tuskegee Syphilis experiment by describing some of her duties and examining why she never questioned the ethical implications of the experiment. The chapter highlights her role as a social cushion between the doctors and men, an effective guard against the men becoming treated, and her adeptness in obtaining consent for autopsies. Nurse Rivers never questioned the ethical implications of the study because she viewed herself as a nurse that is supposed to follow doctor's orders, deemed the early medications as inflicting more harm than therapeutic benefit, and because of societal pressures such as sex roles and race issues.
Chapter 11: "Even at Risk of Shortening Life"
This chapter explains the strategies and mindset of the (VD) PHS officials by identifying their mission as safeguarding the public's health by advocating prophylaxis prompt diagnosis and EARLY TREATMENT. They employed black doctors, surveyed syphilis rates in black communities, and helped staff portable clinics that brought treatment to rural blacks and were considered racial liberals and medical progressives by 1930 standards. There were scarcely any questions of the moral implications of the study; instead, suggestions were made on how to improve the study. The officials wanted to keep the study going because of the amount of work invested by the PHS and how much the end results would benefit science. PHS officials enacted bureaucratic measures to reduce personal responsibility, ethical concern and saw no connection between their practices and the Nuremberg Trials.
Chapter 12: "Nothing Learned Will Prevent, Find, or Cure a
Chapter 12 focuses on the advent of laws that imposed controls on human experimentation and informed consent. The PHS reaction to the new laws was to claim that the men in the study were incapable of comprehending what the study was all about; therefore, informed consent was not granted because of limited education and social status of the men. The PHS continued to use other government agencies and local (black) doctors to keep the study going despite the laws and Civil Rights Movement.
Chapter 13: "I Ain't Never Understood the Study"
This chapter reveals how the syphilis study was exposed and finally put to an end in1973. The leading civil rights abolitionist and most prominent black lawyer from Tuskegee was hired to seek compensation for the victims of the study. After 40 years of lies and deceit by trusted doctors, the Tuskegee experiments resulted in a national review of federal guidelines on human experimentation which lead to the complete revamping of regulations on human experimentation. The government agreed to pay 10 million in an out-of-court settlement (of which the lawyer earned $1 million).
Chapter 14: "AIDS: Is It Genocide?"
Chapter 14 provides a look at the long-term effects that the Tuskegee Syphilis Experiment had on the relationship between the African &emdash; American population and the public health care profession. It explains that the African &emdash; American population became very critical and distrustful of the public health profession after the unveiling of the experiment and as a result did not believe the public health professions warnings about the prevention and seriousness of AIDS. This distrust set the education of the African &emdash; American community about AIDS behind by years and probably caused the unnecessary infection of many people.
Bad Blood is a must read for anybody regardless of your interests. The book gives a terrific chronicle of the experiment with a personal touch. Its a riveting book that shows the level of deceit and human compassion, or lack there of, that the U.S. government has and is willing to go to in the name of "scientific research." It is unimaginable that the government would be involved in this type of project in the 20th century and makes you begin to question their honesty and ethics when it comes to their citizens.
The books accountability of the whites and white run institutions and the subsequent exclusion of blacks and the black institutions in the Tuskegee Syphilis Experiment blame was a major flaw in the book and for that matter in reality. James H. Jones wrote the book with the opinion that the blame for the occurrences in Macon County rest solely with the white run PHS. The actual fact is that without the use of the facilities at the Tuskegee Institute (known as the "Negro Harvard" of the day) and its personnel, without the go-ahead of the Macon County Board of Health in the late 1960s (which by the way was predominately black) the beginnings and continuation of the experiment would never have taken place.
The exclusion of blacks from their accountability was a beautifully executed way of turning the experiment into a racial issue for litigation purposes during the end of the "I have a dream" era. This was done to add fuel to an already out-of-control fire. Race cannot be excluded from the experiment for that is what its whole premise was based upon, but there is a big difference between an experiment that has to do with race, and a racist experiment. The experiment was actually instituted with the hopes of promoting black health and black medical professionals in the United States.
Another improvement James H. Jones could make is giving more detail about the Oslo, Norway experiment. This experiment was the forefather of the Tuskegee experiment yet little was ever mentioned about the specifics and its results.
"Things to think about":