Introduction
The Tuskegee Syphilis experiment refers to a study carried out on a sample of African Americans to determine the effects of untreated syphilis (Brandon, Isaac & LaVeist, 2005). The study went on for approximately four decades after which it was terminated due to ethical issues (Loveridge & Cornforth, 2014). 399 Black Americans participated in the study without prior knowledge of the importance and risks involved in the research. The study was criticized heavily by human rights activists who even launched court battles against the US government over unethical practices in the medical sector (Daugherty-Brownrigg, 2013). Fred Gray, who is a human rights activist lawyer, instituted a case requiring damages to be paid to the affected participants and their families for the infringement of their rights. However, the case did not reach the trial stage as the government intervened and called for an out-of-court settlement at a cost of $10 million (Reverby, 2009). This paper explores the ethical issues surrounding the Tuskegee syphilis study. In addition, the paper summarizes the key facts about the study, sheds light on the impacts of the study to the participants, and analyzes the steps taken by the government to avert the recurrence of such unethical practices in future studies.
Statement of Unethical Issues
The study was unethical as it overlooked the ethical requirements for medical research. The researchers disregarded human life. In addition, the study underscored the ethnic discrimination that existed in the US healthcare sector at the time (Brandon et al., 2005). The following section highlights the major unethical practices in the study.
The participants were not given the opportunity to give their consent to participate in the research (Loveridge & Cornforth, 2014). The knowledgeable assent requires the prior provision of clear and truthful information to the participants regarding the rationale of the study, the risks involved, gain to the subjects, privacy of information, and a declaration that the participation is consensual (Burns & Grove, 2010). In this experiment, information regarding the disease under scrutiny was not availed to the participants. On the contrary, the researchers misinterpreted syphilis to mean bad blood to woo the participants (Brandon et al., 2005).
In addition, the medical ethical code requires the recruitment of subjects into research work to be fair and just (Daugherty-Brownrigg, 2013). The researchers recruited subjects from the vulnerable African American population by promising special treatment to them. Therefore, the sample comprised solely of the blacks, which was an indication that the aspect of fairness was overlooked. This conduct by the medical officers in charge of the research was unethical and unfair to the African Americans considering their susceptible status.
Moreover, the medication offered to the participants in the study was harmful to their lives (Baker, Brawley & Marks, 2005). In addition, the researchers sought to extend the treatment period in the name of studying the effects of the treatment. This aspect underscores the unethical practices that characterized the study right from its commencement. The researchers took advantage of the illiterate nature of the African American participants to misrepresent syphilis as bad blood (Loveridge & Cornforth, 2014).
Finally, the medical ethical code requires researchers to devise ways to achieve minimal risks to the participants of a study (Reverby, 2009). In this experiment, the participants were not informed about the risks involved before enrolling. In addition, no measures were adopted to ensure that the subjects’ risks were minimized (Brandon et al., 2005). Instead, the participants were left to die despite the fact that penicillin, which is the ultimate cure for syphilis, had been discovered. The medics sought to prolong the treatment of the subjects to gain knowledge of the disease. Their practice only increased the participants’ risk instead of minimizing it as required by medical ethics.
Historical Summary
Racial discrimination has riddled the American social fabric with the whites tending to discriminate against people of color. At the time, discrimination was evident in the education and in healthcare sectors, and thus the Tuskegee experiment was not exceptional (Daugherty-Brownrigg, 2013). In the early days, African Americans were used as tools of research whereby they were hunted and traded to researchers who eventually killed them and used them as cadavers for continued study (Loveridge & Cornforth, 2014). The Tuskegee study only served to heighten the fears of mistreatment that dominated the African American population. At the time of the study, the operational ethical framework did not provide for prior disclosure of all the material facts to participants before they can give their consent to take part in research work. This aspect coupled with the lack of clear legislation illegalizing racial discrimination provided an incentive for researchers to conduct unethical studies.
Impact on Subjects and Researchers
Failure by the researchers to obtain informed consent from the participants is indicative of the unethical practices that characterized the research (Burns & Grove, 2010). The research contributed to numerous deaths due to the lack of effective treatment and the prolonged nature of treatment afforded by researchers in this study. In addition, many people were infected with the disease since the researchers failed to inform the subjects on ways to prevent the spread and new infections (Reverby, 2009).
The participating medical officers were given the opportunity to study and gain knowledge on a new disease at the expense of the desperate participants. However, this study had impacts on the subsequent research as it provided the framework for the development of rules and guidelines to be observed by future researchers (Daugherty-Brownrigg, 2013). The study led to the formation of the office of human research as recommended by the Belmont Report of 1979. In addition, various legislations were passed to protect the rights of participants and ensure that research is conducted in line with the ethical provisions. Various review institution boards, which govern the conduct of research work, were also created due to the unethical practices of the Tuskegee study. Conversely, the participants were the ultimate losers in terms of loss of lives and increased infections.
How the Issue is Currently Addressed
Following the Tuskegee experiment, policymakers came up with the Belmont Report of 1979 that made provisions on the procedures for conducting future research (Loveridge & Cornforth, 2014). The report outlines three fundamental ethical codes that must be followed by medical personnel while conducting research involving human subjects, viz. respect for human beings, beneficence, and integrity (Burns & Grove, 2010). Firstly, respect for human beings requires that participants in any study be provided with all the material facts regarding research before consenting to participate (Baker et al., 2005). Second, beneficence requires all the identifiable risks and probable benefits to be revealed to the participants before obtaining such consent from them (Reverby, 2009). Lastly, the integrity principle requires the sample test to be obtained randomly, and thus it should not come from a certain economic, racial, gender, or social class (Daugherty-Brownrigg, 2013).
Conclusion
The Tuskegee study is one of the most unethical studies of all time. The research revolved around establishing the truth of the hypothesis that the Blacks had higher immunity to syphilis as compared to their white counterparts. The theory claimed that the whites were more susceptible to neurological complications as compared to the Blacks. Consequently, a sample of African Americans was obtained for testing. However, as opposed to the expectations of the participants, they were not given treatment. On the contrary, they were left to die from the disease. Following the unethical practices cited in the research, the government established review boards to preside over the conduct of future research.
References
Baker, M., Brawley, W., & Marks, L. (2005). Effects of untreated syphilis in the negro male, 1932 to 1972: a closure comes to the Tuskegee study, 2004. Urology, 65(6), 1259-1262.
Brandon, T., Isaac, A., & LaVeist, T. (2005). The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care. Journal of the National Medical Association, 97(7), 951-56.
Burns, N., & Grove, S. (2010). Understanding nursing research: Building an evidence-based practice (5th ed.). Maryland Heights, MO: Elsevier Health Sciences.
Daugherty-Brownrigg, B. (2013). Tuskegee Syphilis Study. In S. Loue (Ed.), Mental Health Practitioner’s Guide to HIV/AIDS (pp. 423-426). New York, NY: Springer.
Loveridge, J., & Cornforth, S. (2014). The ages of consent: re-working consensual frameworks in postmodern times. International Journal of Qualitative Studies in Education, 27(4), 454-471.
Reverby, S. (2009). Examining Tuskegee: The infamous syphilis study and its legacy. Chapel Hill, NC: UNC Press.