Every “breakthrough” in research has always “been in the name of science.” At least, that was the justification used to unethically experiment on 600 Black men in 1932 [1]. In Macon, Alabama, the U.S. Public Health Service and the Tuskegee Institute jointly coordinated a research project that would observe and analyze the “natural progression of syphilis” in Black males [2].
Originally titled the “Tuskegee Study of Untreated Syphilis in the Negro Male,” for this study, researchers recruited 600 Black men, 399 of whom had syphilis [1]. The most jarring fact about this horrific experiment was that the researchers never obtained the informed consent of the participants; in fact, they did not even explain the purpose of the experiment [1]. The most information they gave was that the men were being treated for “bad blood,” a catch-all term that could describe anything from syphilis to anemia, and that they would receive compensation for being in the study [1]. For free medical exams, hot meals, and insurance, the participants were willing to participate in this experiment, completely unaware of the consequences of that decision [2].
For years, researchers concealed the true intent of their experiment, stringing along the participants without giving them any hope for treatment or recovery [1]. Even when penicillin was first widely used as a form of treatment for syphilis in 1943, the study participants were not aware of this treatment option at all [1].
Finally, on July 25, 1972, Associated Press reporter Jean Heller broke the story about the so-called 40-year-long study that unethically investigated the effects of untreated syphilis in Black men [2]. Heller revealed that for the duration of the ongoing study, many participants had died and infected their wives, children, and numerous others [2]. Intense public outcry prompted the formation of the Ad Hoc Advisory Panel, which consisted of 9 members with health administration, medicine, law, religion, and education backgrounds to examine the deep-rooted consequences of the study [2].
The panel concluded that while the men willingly participated in the experiment, several ethical breaches were committed throughout the course of the study [2]. For example, the men were never informed about the nature of the experiment, so they could never provide informed consent to participate in the study [2]. This, in turn, made them unaware of the consequences of continuing to be in the study, including the physical and emotional impacts it might have on their partners, family, or potential children they might conceive [2]. Most concerning, the participants were never given the opportunity to drop out of the study, even when penicillin became available to treat syphilis [2].
After the panel had reached this conclusion, a number of actions were taken to right the wrongs of the Tuskegee syphilis experiment [2]. Attorney Fred Gray filed a class-action suit on behalf of the participants and their families [2]. Eventually, a settlement was reached in which $9 million was divided among the study participants as reparations for the damage from the experiment [2]. In 1997, President Bill Clinton issued a formal presidential apology to the participants and their families [3].
Perhaps the most important breakthrough made in the field of research ethics in the aftermath of the Tuskegee experiment was the creation of the Belmont Report. An ethics advisory board formed by the U.S. Office of the Secretary in the late 1970s came together to review ethical issues in research [3]. Since Tuskegee, policies for human subject research have been intensely scrutinized and revised in order to ensure and promote the highest ethical standards [4]. The collaborative efforts of the board eventually led to the Belmont Report [4].
The report revolved around three important principles that should be at the center of any research study: respect for persons, beneficence, and justice [4]. Respect for persons emphasizes that each individual should be treated as an “autonomous agent” and that individuals with diminished autonomy are entitled to some form of protection when they have to make decisions about their health or safety [4]. Beneficence means that every person should be treated in an ethical manner by researchers who must respect their decisions and protect them from harm but also “secure their well-being,” [4]. The ethics advisory board understood beneficence as an “obligation” to human subjects to protect them [4]. Justice means that every person is equally likely to be selected for a research study [4], which is a direct contradiction to the Tuskegee experiment where the men were selected because they were readily available [2]. Since these principles were put into writing, every research study must adhere to these guidelines in order to be ethical [4].
Now, no breakthrough is acceptable or admirable if it brings harm to the subjects it studies. The Belmont Report is so heavily ingrained in the research world that every researcher or scientist swears by its words and principles in every experiment they conduct [4]. Contemporary science favors the wellbeing of the subject, which is a universal principle that will always stand the test of time.
1. Centers for Disease Control and Prevention. (2022, December 5). The Untreated Syphilis Study at Tuskegee Timeline. Centers for Disease Control and Prevention. https://www.cdc.gov/tuskegee/timeline.htm.
2. Centers for Disease Control and Prevention. (2021, April 22). Tuskegee Study - Research Implications - CDC - NCHHSTP. Cdc.gov. https://www.cdc.gov/tuskegee/after.htm.
3. Office for Human Research Protections. (2018, January 15). The Belmont Report. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html.
4. Tuskegee University. (2019). About the USPHS Syphilis Study . Tuskegee University; Tuskegee University. https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study.