Ethics play a crucial role in society and engaging in ethical behavior is the foundation of a well functional society. One area in society where ethical conduct is of great significance is in the medical sector. Unethical practices in medical circles are likely to result in dire consequences. Arguably the most infamous biomedical research study in US history is the US Public Health Service Tuskegee Syphilis Study that ran from 1932-1972. This infamous study was marred by the rampant abuse of test subjects by the researchers. The study also involved great deception by the researchers who were willing to engage in unethical conduct in order to continue with their study. In so doing, the Tuskegee Study violated some of the key tenets of biomedical research, which require the researchers to conduct their studies in a manner that is transparent and protects the patients. This paper will set out to review the infamous Tuskegee Syphilis Study (TSS) with the intention of highlighting the gravely unethical nature of this particular study. The paper will begin by providing a historical overview of the study and proceed to highlight the impacts of the study on subject and researchers. It will highlight the far-reaching consequences that the unethical conduct of the TSS resulted in.
Historical Summary of the Factors related to the Issue
The Tuskegee Syphilis Study was a biomedical experiment carried out by government researchers in the US from 1932 to 1972. The researchers hoped to study the effects of untreated syphilis among male Negro subjects over an extended period of time. The study was necessitated by the prevalence of syphilis among Black Americans in most states. The primary objective of this study was to study the disease with the aim of being able to come up with an effective mass treatment. The study was carried out in Macon County Alabama and the research subjects were 399 blacks of a poor socio-economic background. Macon County was selected since statistics indicated that this country had the highest syphilis rates in the State. The researchers set out to study the natural course of progression of syphilis. All the test subjects used were therefore suffering from the disease before the start of the study. About 200 uninfected men were used as controls in the study. In addition to tracking the natural progression of the disease, the study hoped to show that it was unnecessary to provide antisyphilic treatment for latent syphilis.
There are a number of research abuses that were prominent in the Tuskegee study. To begin with, the study involved deceptions and widespread lying by the researchers. Since the researchers knew that few if any subjects would volunteer for the study if they knew its true intentions, the subjects were blatantly lied to. While they suffered from syphilis, the experimenters told them that they suffered from “bad blood” and would be provided with free treatment as long as they regularly attend the clinic. The researchers and physicians in the TSS withheld health information from the participants by refusing to tell them that they had syphilis or provide them with information on the treatment options open to them. Due to this deception, the participating subjects were deprived of the right to choose whether or not to participate in the study (Fairchild & Bayer, 1999).
Another abuse was that the study involved the exploitation of social vulnerability in the recruitment and retention of research subjects. This entailed a violation of the civil rights of the subjects on a basis of their race and socio-economic status. The study targeted the disenfranchised Black Americans in rural Alabama. Most of these sharecroppers from rural Alabama were poor and illiterate. The participants where lured into the study by being offered free treatment for “bad blood”. Owing to their poor socio-economic statuses, the African American men were keen to benefit from these free services. Almost all the subjects therefore made an effort to regularly attend the clinic to obtain the free treatment. While the economically disadvantaged subjects thought they were benefiting from the program, the researchers gave them placebo treatment and continued to observe the progression of the syphilis in the subjects.
The rights of the subjects to health were infringed upon by the researchers. The TSS researchers took measures to prevent the subjects from accessing the appropriate medical care for their syphilis. TSS was designed as a study of “untreated syphilis” and it would therefore be detrimental to the outcomes of the study if the men obtained treatment. The US Public Health Service therefore engaged in efforts to prevent the subjects from obtaining treatment. Katz et al (2008) reveals that the TSS subjects were tracked to other public health departments across the country and physicians were advised not to provide treatment to the men. The conspiracy between the researchers and local physicians effectively ensured that the research subjects were unable to access the medical aid necessary to treat their condition. Fairchild and Bayer (1999) reveal that the Tuskegee researchers justified this action by arguing that never again would they find such a group of untreated individuals. By denying the subjects treatment, the researchers went against the code of nonmaleficence, which dictates that physicians must not engage in actions that might harm the patient.
Potential or Real Impact on Subject and Researchers
The Tuskegee Syphilis study led to a high increase in the distrust of medical researchers in the US. Before this incident, researchers were held in high esteem and their work was well respected by the public. However, after the exposure of the Tuskegee study, the public adopted a suspicious view of medical research. Fairchild and Bayer (1999) confirm that the Tuskegee syphilis study came to symbolize the most shocking abuse of authority by researchers. Minority groups adopted an attitude of suspicion towards government programs. As such, this unethical incident served as the point of reference for the distrust of researchers especially by the African American community. The Tuskegee study led to increased opposition to future government programs aimed at improving the health of the community (Katz et al., 2008). For example, the1988 needle exchange effort by New York’s city health commissioner was denounced by the African American Community. Representatives of this community expressed sensitivity to doctors conducting experiments where the blacks were used as guinea pigs (Fairchild & Bayer, 1999).
The ability of researchers to attract participants for biomedical studies was greatly diminished by the TSS incident. When the accounts of the experiment were made public in 1972, there was a public outrage against the researchers. There was general consensus that the study was ethically unjustified since subjects were recruited through false promises and these participants were prevented from accessing effective treatment. Mays, Coles and Cochran (2012) state that minorities are more reluctant to participate in biomedical research. This reluctance is caused by the memory of the TSS incident where African American participants were deceived and exploited by researchers. Minority groups in the US express concern that they might be treated like guinea pigs in clinical trials and taken advantage of during the biomedical studies.
The TSS led to unnecessary pain, deterioration in health, and the eventual death of a large number of the participants. As previously noted, the 399 participants were suffering from syphilis from the onset of the study. The researchers withheld standard treatment for the participants leading to a progression of the disease. The subjects were subjected to painful spinal taps during their regular clinic visits but they did not receive effective treatment. This spinal taps were aimed at obtaining fluids for the researchers to analyze. Walker (2009) documents that by the end of the experiment in 1972, 28 of the original men died directly of syphilis and 100 more died from related complications.
The subjects ended up being risks to their families since they had untreated syphilis. Forty wives of the TSS subjects were infected with syphilis by their husbands. Walker (2009) documents that even more devastatingly, 19 children were born with congenital syphilis acquired from their parents. All this negative outcomes could have been prevented if the researchers had considered the human rights of the participants and allowed them access to treatment (Mays et al., 2012).
How the Issue is currently addressed in Research
The Tuskegee study is viewed as an awful historical episode that led to significant adverse effects on the subjects, whose most basic rights were violated for 40 years. To avoid the recurrence of such an incident, various actions were taken by the government and the research community. To begin with, the Tuskegee study led to an increase in the emphasis on the adherence to standards of moral responsibility by researchers. In the decades following the study, researchers were challenged to carry out their research with certain moral obligations. As a legacy of the Tuskegee study, researchers today are unlikely to get away with deception or capitalizing on social deprivation to conduct their studies (Katz et al., 2008).
There is today an increase in the liability of researchers for the health and wellbeing of their subjects during studies. The notorious Tuskegee study was possible since researchers did not care for the wellbeing of the research participants. This outlook was greatly condemned following the exposure of the TSS. One principle developed as a result of the study was that “it is not ethically acceptable to learn from the misery of the vulnerable without protecting them from known risks of serious harm” (Fairchild & Bayer, 1999, p.920). Researchers are required to intervene if they observe their subjects developing diseases that can be prevented using available medication.
The TSS led to the passing of the National Research Act of 1974. This ACT led to the formation of Institutional Review Boards (IRBs) that are tasked with screening and regulating all research studies that involve human participants in government funded institutes (Walker, 2009). These boards have stringent criteria for ethical responsibility in all the experiments carried out. By carefully screening and regulating research studies, the Institutional Review Boards ensure that participants are protected from abuse and exploitation by researchers. In addition to this, Mays (2012) notes that the government developed ethics training materials that would educate biomedical researchers about core ethical principles to prevent similar research abuses form occurring.
This paper set out to discuss the infamous Tuskegee Syphilis Study so as to underscore the unethical nature of the study. The TSS symbolizes how vulnerable populations who are least able to protect themselves from abuse can be exploited for medical experimentation. This study was marred by unethical conducts including lying to the participants and showing no concern for their health or well being. The paper has noted how Tuskegee continues to encourage an atmosphere of mistrust around research especially when the subjects of the study are poor and vulnerable population groups. Even so, Tuskegee stimulated productive reflection on questions of ethics and lead to some profound changes in the conduct of researchers. These changes ensure that biomedical research involving human participants are carried out in an ethical manner and the subjects are not exposed to unnecessary risks.
Fairchild, A., & Bayer, R. (1999). Uses and Abuses of Tuskegee. Science, 284(16), 919-921.
Katz, R., Kegeles, S., Kressin, N., Green, B., Sherman, J., Wang, M., Russell, S., & Claudio, C. (2008). Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their influence on Minority Participation in Biomedical Research. American Journal of Public Health, 98(6), 1137-1142.
Mays, V. (2012). The Legacy of the U. S. Public Health Service Study of Untreated Syphilis in African American Men at Tuskegee on the Affordable Care Act and Health Care Reform Fifteen Years after President Clinton’s Apology. Ethics & Behavior, 22(6), 411-418.
Mays, V., Coles, C., & Cochran, S. (2012). Is There a Legacy of the U.S. Public Health Syphilis Study at Tuskegee in HIV/AIDS-Related Beliefs Among Heterosexual African Americans and Latinos? Ethics & Behavior, 22(6), 461-471.
Walker, C. (2009). Lest we forget: The Tuskegee Experiment. Journal of Theory Construction & Testing, 13(1), 5-6.