By: Carol A. Heintzelman
Fall 2003, Vol. 10, No. 4
The Tuskegee Syphilis Study and Its Implications for the 21st Century
by Carol A. Heintzelman, DSW, ACSW, LSW
The Tuskegee Study of Untreated Syphilis in the African American Male is the longest nontherapeutic experiment on human beings in medical history, as noted by Arthur L. Caplan (1992). Begun in 1932 by the United States Public Health Service (USPHS), the study was purportedly designed to determine the natural course of untreated latent syphilis in some 400 African American men in Tuskegee, Macon County, Alabama. The research subjects, all of whom had syphilis when they were enrolled in the study-contrary to the “urban myth” that holds “black men in Alabama were injected with the virus that causes syphilis” (Walker, 1992)-were matched against 200 uninfected subjects who served as a control group.
The subjects were recruited with misleading promises of “special free treatment,” which were actually spinal taps done without anesthesia to study the neurological effects of syphilis, and they were enrolled without their informed consent.
The subjects received heavy metals therapy, standard treatment in 1932, but were denied antibiotic therapy when it became clear in the 1940s that penicillin was a safe and effective treatment for the disease. When penicillin became widely available by the early 1950s as the preferred treatment for syphilis, this therapy was again withheld. On several occasions, the USPHS actually sought to prevent treatment.
The first published report of the study appeared in 1936, with subsequent papers issued every four to six years until the early 1970s. In l969, a committee at the federally operated Center for Disease Control decided the study should continue. Only in 1972, when accounts of the study first appeared in the national press, did the Department of Health, Education and Welfare (HEW) halt the experiment.
At that time, 74 of the test subjects were still alive; at least 28, but perhaps more than 100, had died directly from advanced syphilis. An investigatory panel appointed by HEW in August 1972 found the study “ethically unjustified” and argued that penicillin should have been provided to the men. As a result, the National Research Act, passed in 1974, mandated that all federally funded proposed research with human subjects be approved by an institutional review board (IRB). By 1992, final payments of approximately $40,000 were made to survivors under an agreement settling the class action lawsuit brought on behalf of the Tuskegee Study subjects. President Clinton publicly apologized on behalf of the federal government to the handful of study survivors in April 1997.
Several major ethical issues involving human research subjects need to be studied further. The first major ethical issue to be considered is informed consent, which refers to telling potential research participants about all aspects of the research that might reasonably influence their decision to participate. A major unresolved concern is exactly how far researchers’ obligations extend to research subjects. Another concern has to do with the possibility that a person might feel pressured to agree or might not understand precisely what he or she is agreeing to. The investigators took advantage of a deprived socioeconomic situation in which the participants had experienced low levels of care. The contacts were with doctors and nurses who were seen as authority figures.
The USPHS practiced deception in recruiting subjects for the study. It was never explained to the subjects that the survey was designed to detect syphilis. The term “bad blood,” which was a local colloquialism for everything from anemia to leukemia, was used by the doctors and never defined for the subjects. Subjects were never told they had syphilis, the course of the disease, or treatment. The treatment presented consisted of spinal taps, which were described as “spinal shots” (Heintzelman, 1995).
The second major ethical issue is the withholding of treatment for research purposes. This is the gravest charge against the study. Patient welfare was consistently overlooked, although there have been multiple attempts to justify why penicillin treatment was withheld. Some physicians felt that repair of existing damage would be minimal, and others felt that the damage that could result from reactions to the penicillin therapy, including fever, angina, and ruptured blood vessels, would outweigh its benefits. At the time of the Tuskegee Study, no data was available on the efficiency of penicillin treatment in late syphilis, and short- and long-term toxic effects of drugs had not been well documented. In short, when the study was evaluated periodically, researchers judged that the benefits of nontreatment outweighed the benefits of treatment. Moreover, the subjects were never given a choice about continuing in the study once penicillin had become available; in fact, they were prevented from getting treatment.
The decision was made based on several factors, including the quiescent state of the disease, assumptions about the participants, and fear related to the danger of lethal reactions if the men were to receive penicillin. So treatment was not offered, and even when the experiment ended in 1972, the remaining funds could not be used for treatment, according to USPHS grant guidelines (Heintzelman, 1996).
Several other ethical issues surrounded the study. First, Alabama had passed a law in 1927 that required the reporting and treatment of several venereal diseases, including syphilis, by medical personnel. The USPHS ignored the state law, choosing to disregard the impact of untreated syphilis on wives of the married men who were subjects.
Second, accurate records were not kept. The number of subjects who died from syphilis was never known. The number of survivors was estimated to be between 76 and 111, and the number of dying was estimated between 28 and 101.
Third, beliefs within the medical profession about the nature of African Americans, sexual behavior, and disease clouded the study. As a result, the health of an entire community was jeopardized by leaving a communicable disease untreated.
Fourth, although no comprehensive report was ever published, the study was reported in medical journals for nearly 40 years without protest from anyone in the medical community. The investigating doctors never questioned the morality of the study. Also, HEW had no mechanism for periodic reassessment of the ethics and scientific values of the studies being conducted.
The Tuskegee Syphilis Study forced the nation to rethink and redefine practices involving human experimentation, especially those involving minority populations. As a consequence, HEW established a National Human Investigation Board, and legislation was passed requiring the establishment of Institutional Review Boards (IRBs).
A class action suit filed in the 1970s on behalf of the survivors resulted in no new law and avoided the issue of government responsibility for injury in such an experiment. Each survivor received a settlement of approximately $40,000.
The most enduring legacy of the Tuskegee Syphilis Study is its repercussions in the African American community, which have implications in light of the AIDS epidemic. The study laid the foundations for African Americans’ continued distrust of the medical establishment, especially public health programs and a fear of vaccinations. It reinforced views about the medical establishment and the federal government, as well as disregard for African American lives. Although community outreach efforts have done much to combat the misconceptions, there seems to be evidence that African Americans did not seek treatment for AIDS in the early 1980s because of distrust of health care providers regarding the diagnosis, prognosis, and treatment of AIDS.
James H. Jones, an historian and specialist in bioethical issues, wrote in Bad Blood: The Tuskegee Syphilis Experiment (1993) the following:
“As a symbol of racism and medical malfeasance, the Tuskegee Study may never move the nation to action, but it can change the way Americans view illness. Hidden within the anger and anguish of those who decry the experiment is a plea for government authorities and medical officials to hear the fears of people whose faith has been damaged, to deal with their concerns directly, and to acknowledge the link between public health and community trust. Government Authorities and medical officials must strive to cleanse medicine of social infection by eliminating any type of racial or moral stereotypes of people or their illnesses. They must seek to build a health system that will make adequate health care available to all Americans. Anything less will leave some groups at risk, as it did the subjects of the Tuskegee Study” (p. 241).
Caplan, A. L. (1992). Twenty years after: The legacy of the Tuskegee syphilis study-When evil intrudes. Hastings Center Report, 22, 29-32.
Heintzelman, C. A. (1995, March). Ethical issues in social work research: The Tuskegee syphilis study, 41st Annual Program Meeting, Council on Social Work Education, San Diego, California.
Heintzelman, C. A. (1996). Human subjects and informed consent: The legacy of the Tuskegee syphilis study. Scholars, 6 (1), 23-30.
Jones, J. H. (1993). Bad blood: The Tuskegee syphilis experiment. New York: The Free Press.
Monette, D. R., Sullivan, T. J., & DeJong, C. R. (2002). Applied social research: Tool for the human services (5th ed.). New York: Harcourt.
Walker, A. (1992).Possessing the secret of joy. London: Vantage Press.
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Caldwell, J. G., Price, E. V., Schroeter, A. L., & Fletcher, G. F. (1973). Aortic regurgitation in the Tuskegee study of untreated syphilis. Journal of Chronic Diseases, 26, 187-194.
Code of ethics of the National Association of Social Workers. (1999). Washington, D.C.: NASW Press.
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Final report of the Tuskegee syphilis study ad hoc advisory panel. (1973). (“ A panel created to investigate the circumstances surrounding the study of untreated syphilis in the male Negro, initiated by the United States Public Health Service in 1932. U.S. Department of Health, Education, and Welfare, Public Health Service.”).
Fost, N. (1997, January 24). When patients can’t provide informed consent. The Chronicle of Higher Education, A48.
93rd Congress. (1973). Hearings of the U. S. Senate, Subcommittee on Health of the Committee on Labor and Public Welfare, Quality of health care-Human experimentation.
Heintzelman, C. A. (2002). Social work research I: The Tuskegee syphilis study in P. N. Black, E. P. Congress & K. Strom-Gottfried, (Eds.), Teaching Social Work Values and Ethics: A Curriculum Resource. Washington, D.C.: Council on Social Work Education.
Reverby, S.M. (Ed.) (2000). Tuskegee' truth: Rethinking the Tuskegee syphilis study. Chapel Hill: University of North Carolina Press.
Rivers, E., Schuman, S. H., Simpson, L., & Olansky, S. (1953, April). Twenty years of followup experience in a long range medical study. Public Health Reports.
The Tuskegee Syphilis Study: Questions for Ethical Consideration
- How do the issues of informed consent, confidentiality, and disclosure of results apply to the Tuskegee Syphilis Study?
- What recommendations could you make to the researchers to safeguard the ethical standards for research in the Tuskegee Syphilis Study? Consider each of the following ethical issues: informed consent; confidentiality; privacy; physical or mental distress; sponsored research; honest disclosure of results; scientific advocacy; protecting vulnerable clients; and withholding treatment for research purposes. Do you think the study could be done ethically at all? Support your conclusion.
- Suppose you are working in an AIDS treatment unit, and a proposal is made to initiate a new treatment program that looks promising but is largely untested. Under what conditions do you think it would be acceptable to utilize a control group as a comparison group that does not receive any treatment? Under what conditions would it be ethically unacceptable? How might you avoid some of the ethical dilemmas that come from withholding treatment but still have some form of control group to use for comparison?
(Adapted from Monette, D.R., Sullivan, T.J., & DeJong, C.R. (2002).Applied social research tool for the human services (5th ed.). New York: Harcourt.)
Carol A. Heintzelman, DSW, ACSW, LSW, is Professor of Social Work at Millersville University of Pennsylvania.
Copyright © 2003 White Hat Communications. All rights reserved. From THE NEW SOCIAL WORKER, Fall 2003, Vol. 10, No. 4. For reprints of this or other articles from THE NEW SOCIAL WORKER (or for permission to reprint), contact Linda Grobman, publisher/editor, at P.O. Box 5390, Harrisburg, PA 17110-0390, or by e-mail.
The purpose of this paper is to elaborate on the Tuskegee Experiment based upon previous international study, it will also state the original study and where did it originate, the purpose of the study and the results. It will also state who or what were the principal investigators, the participants (gender, race, age), why and how did this study end. The original study of the Tuskegee research was a disreputable medical experiment carried out in the United States between 1932 and 1972, in which almost 400 black Americans with syphilis were offered no medical treatment, allowing researchers to see the course of the disease. The events of the Tuskegee research triggered extensive values of legislation, including the National Research Act, and the experiment attracted a great deal of public attention. Many people regard the Tuskegee Experiment as an extremely shameful event in American history, and several organizations including the Centers for Disease Control have extensive archives on the experiment which are available to interested members of the public who want to learn more about it.
According to Daniels, N., Kennedy, B. P., & Kawachi, I. (2007). The original study of the Tuskegee syphilis experiment was an infamous clinical study conducted between 1932 and 1972; it originated in the early 1930s with the goal of exploring the effects of unthreaded syphilis in black males in the county of Macon, Alabama. During the beginning of the 1900s Macon County’s population, as a consequence for its poor educational system and the unsafe effects of economic depression, was composed mostly by illiterate farm workers. According to Brandt, A. M. (2010) The U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. It was noted that 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. They were 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. Furthermore, there were so many problems with the Tuskegee Experiment that it is difficult to understand. The architects of the experiment claimed that they were performing valuable research on the disease, but even at the time, many people doubted this, especially after 1947, when penicillin treatment for syphilis became available. The primary value of the study subjects to the researchers from the United States Public Health Service and the Tuskegee Institute was as autopsy subjects, as they claimed that they were going to prove that untreated syphilis caused extensive cardiac damage in blacks.
Daniels, N., Kennedy, B. P., & Kawachi, I. (2007) stated that, ‘The Tuskegee Study of Untreated Syphilis in the African American male is the longest no therapeutic experiment on human beings in medical history. During the research, It was noted that the nature of the maltreatment being investigated initially involved 600 black men 399 with syphilis, 201 who did not have the disease. However such expectations only emerged after a few tragically mislead studies caught the attention of academia and of all society itself. Among these works, the Tuskegee Study of Untreated Syphilis in the African American Males is held as one of the main causes for the new institutionalization of ethic. Based on the finding, the lessons taught by the mistakes made by the Tuskegee researchers was applied to all scientific work so that the Study which was a tragic outcome may not be repeated.
The research subjects were very poor black sharecroppers from rural Alabama. The study lacked even the basics of informed consent, with participants being told that they were receiving treatment for “bad blood.” Over the course of the study, the men were periodically called in to receive “treatments” which were actually medical tests used to gauge the severity of their conditions, and the progress of the syphilis was documented by the research team. The men were offered no treatment, and were in fact deliberately denied available syphilis treatments, an action which runs different to the most fundamental of medical principles.
According to Katz, R. V., & Warren, R. C. (2011).It was noted that 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. Furthermore, the subjects were given no information about their condition or about treatment options. By the end of the study, in the year of 1972, only seventy-four were still alive; it is estimated that more than a hundred died from advanced syphilis lesions.
Based on eugenic and deterministic affirmations, as well as on the ideas of Social Darwinism, the top researchers considered that male African Americans were the best for such research due to their corrupted morale and excessive sexual desire´, as noted by Allan M. Brant (2009). Joseph E. Moore, a reputed expert in venereal diseases at the time, implied that syphilis in African Americans was an illness almost entirely different from syphilis in the Caucasian population (IESS, p.472).Social outcomes from the Tuskegee Study are observed in the attitudes African American have towards government medical initiatives. Also it was noted that over the course of the study, 40 wives were infected with syphilis, and 19 children were born with congenital syphilis.
A number of the men died incredibly painful and prolonged deaths as a result of untreated syphilis, and some of the researchers on the program began to doubt its merits. Several whistleblowers independently wrote concerned letters, but the study did not really begin to attract scrutiny until 1972, when a reporter named Jean Heller broke the story in the Washington Star. . These characteristics reflect a specific demographic profile that continues to have the highest morbidity and mortality rates in the United States (Osler, 1994; Satcher et al., 2005). The men in the Syphilis Study were intentionally uninformed and misinformed by federal and state government officials about an experiment in which they were the subjects (Jones, 1981;Katz & Warren, 2011; Reverby, 2000, 2009). Moreover, treatment was systematically denied by federal and state public health officials even after effective treatment was available. (Katz &Warren, 2011). The study continued for more than 40 years, yet no written record to date has been found that can be examined of the intentional misinformation as a part of the approved research protocols (Williams & Williams, 2011).
The men and their families were told that they had “bad blood” (Jones, 1981). Over the years, the men underwent a series of “medical procedures” to collect biologic samples, and they were led to believe that they were being treated for a disease or an adverse medical condition. These violations are consistent with the definition of bioethics as applied ethics focusing on doctor-patient relationships and how changes in the health care system affect it (Daniels, Kennedy, & Kawachi, 2007). The end point of the study was not just the study of the syphilis alone, but it also became, for the African American men, a study after their death so autopsy could be performed (Williams &Williams, 2011). Public health strives to improve quality of life and longevity of populations.
This is in contrast to the endpoint of death for the African American men in the U.S.Public Health Service Tuskegee Study of Untreated Syphilis in the Negro Male. Thus, the Syphilis Study violated principles and practices of public health ethics as well. During the sxperiment, it was noted that When Americans learned that black men had been allowed to suffer from advanced syphilis without treatment, the public outcry led to a cancellation of the study, along with the prompt passage of several laws designed to spell out fundamental medical ethics which all experiments in the future would be expected to observe. In 1973, the National Association for the Advancement of Colored People (NAACP) won a nine million dollar lawsuit, using the proceeds to fund medical care for the victims of the experiment. The United States government also agreed to provide lifetime free medical care to the men along with their wives and surviving children. According to Bozeman etal. (2009).
The subjects of study were attracted by the promises of treatment, which was never done, and were never informed of the actual goal of the research nor its results. Denying the right for informed consent is denying the subjects of research of their basic freedom of choice; it is doubtful that as many black males would have accepted to be part of the experiment if they knew the exact conditions they would have to endure for the rest of their lives. This as an act of racial profiling as the gravest charge against the study is the intentional prohibition of treatment for the sick men, a choice that harmed not only the subjects of study but also, as written beforehand, the whole county with the continued presence of syphilis. .Although it took forty years of ³scientific´ studies, the Tuskegee Experiment had no positive outcome for the medical sciences.
Fortunately, the suffering endured by all the men studied was not in vain. The Tuskegee Study set the basis for the reconstruction of the notion of ethics and racism in the practice of medicine. Human experimentation, especially those involving minority populations practices had to be reconsidered after the Tuskegee Experiment gained public attention (Heintzelman2003). It is important to analyze the impacts of the Study upon the work of the social scientists because the influence of social sciences in the ordinary man is just as big as the influence of medicine. Social statistical work can validate certain ideas, like the eugenic theories for example, that might fate a whole society to inequality and prejudice. The problem of informed consent is not restricted to the medical sciences; social experimentation involves manipulating certain conditions of the human nature, which might be harmful to the subjects of study.
Most importantly, the Tuskegee Experiment gave ethics a new stand of importance within the social sciences. In history, the issue of ethical treatment for the members in experiments for the social sciences is related to sharp public reactions to all kinds of studies with human subjects. Studies like the one done in Macon County influenced significant questions about the rights´ of human subjects and the responsibilities. The new standards of conduct for experimental research´ require all scientists to compare the risks for the participants to the possible benefits´ of the research. Furthermore, the social scientist must not focus all attention towards being ethical in the process of research and forget about being ethical with the results for the final results of a study might be harmful to a society as a whole.
The last ethical lesson of the Tuskegee Study is that unethical procedures are present even when no harm is intended. Another proof of the lack of malice in the researcher intentions was the African American doctors belief that the Study represented a chance for the black to proof that it is not inferior to any other race.(Sargent 1997).) However, although no harm was intended the Tuskegee Experiment is an example of lack of ethics in experimentation, showing that good intentions do not secure ethical research. The importance of ethical guidelines for the life in society is clear; a conjunct of values must be present in the social life otherwise it can only lead to chaos. Especially in the scientific field, much the awareness for such importance was born after the Tuskegee Study showed society how tragic can be the results of unethical work. The history of the Study plays a relevant role for the continuous appliance of ethics in scientific research and therefore must never be forgotten.
The teachings of the Tuskegee must serve as an example for all scientific study to come in order to avoid the repetition of unethical scientific practice. It was not until 1997 that the federal government issued a formal apology for the Tuskegee Experiment, in the form of an address from President Bill Clinton. The Tuskegee Experiment continues to rankle with many black Americans, who compare it to the medical experiments performed by Nazis in German concentration camps. Not only was the Tuskegee Experiment morally unconscionable, it was also medically pointless, having no practical value whatsoever, and this makes it all the more shameful. Furthermore, it was noted that in 1979 they published “Ethical Principles and Guidelines for the Protection of Human Subjects of Research,” which is commonly referred to as “The Belmont Report.”
This document presents a well-developed ethical framework for the exploration of the issues associated with the use of human beings as the subjects of research. More comprehensive than the Nuremberg Code, it defined the boundary between accepted therapeutic practice and experimental research, and proposed the following three basic principles to guide in the evaluation of the ethics of research involving human subjects which includes Respect for Persons, Beneficence, and Justice. Respect for Persons incorporates the convictions that individual research subjects should be treated as autonomous agents, and that persons with diminished autonomy (such as prisoners or inmates of mental institutions) are entitled to protection.
Beneficence explained the research involving human subjects should do no intentional harm, while maximizing possible benefits and minimizing possible harms, both to the individuals involved and to society at large. Justice implies as an attention needs to be paid to the equitable distribution within human society of benefits and burdens of research involving human subjects. In particular, those participants chosen for such research should not be inequitably selected from groups unlikely to benefit from the work. The Belmont report has greatly influenced the codes and regulations regarding human subjects’ research that have since been established in the United States by federal and many state governments, universities, professional organizations and by private research institutions, as well as similar codes and regulations elsewhere in the world. In 1997, President Bill Clinton issued a formal apology for the egregious wrongs committed by the U.S. government in the Tuskegee Study.
But the Tuskegee Study’s harmful legacy lives on in the African American community. Because the experiment was perpetuated exclusively on African Americans, it has tainted their Relationship with members of the health professions. The Study is cited as one reason why few African Americans participate in clinical research, why they frequently avoid preventative care, and why rumors of government-controlled genocide (e.g., AIDS epidemic, birth control) persist to the present day (Katz et al, 2006). It was further noted that President Barack Obama personally apologized to his Guatemalan counterpart for a US-led study conducted in the 1940s, in which hundreds of people in the Latin American state were deliberately infected with sexually-transmitted diseases. In a phone conversation with Guatemalan President Alvaro Colom, Obama expressed his deep regret for the experiment conducted by US public health researchers in Guatemala between 1946 and 1948, and apologized “to all those affected.
“The US president also vowed that all human medical studies conducted today will be held to exacting US and international legal and ethical standards. Furthermore, we hope that the lessons learned from the Syphilis Study and its implications have led to alternative strategies to improve the public’s health, as the health community strives to meet the unique challenges of the 21st century. The lessons learned from the legacy of the Syphilis Study serve as admonition for the United States to actively work against the unethical drive to dismantle the benefits that health reform will have for the underserved and those that are experiencing health disparities, as well as the general U.S. population. Also we commit to increase our community involvement so that we may begin restoring lost trust. The study at Tuskegee served to sow distrust of our medical institutions, especially where research is involved. Since the study was halted, abuses have been checked by making informed consent and local review mandatory in federally funded and mandated research. The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair. They had the power to heal the survivors and all the others.
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