The Tuskegee Syphilis Study violated all basic ethical principles of research: beneficence, respect for persons, and justice.
The first basic ethical research principle introduced in the Belmont Report is beneficence. Beneficence is defined as the ethical treatment of people by “protecting them from harm” while “securing the person’s well-being” and “respecting their decisions” (US Department of Health, Education, and Welfare 1979). It can be summarized in two rules:
- “do not harm” and
- “maximize possible benefits and minimize possible harms” (US Department of Health, Education, and Welfare 1979).
The Tuskegee Syphilis Study violated this principle as the people included in the study were not protected or respected. Firstly, they did not get enough information about their condition, the purpose of the study, specific procedures, and possible risks (Heintzelman 2003:4). The subjects were “recruited with misleading promises of special free treatment,” which turned out to be a spinal tap done without any anesthesia (Heintzelman 2003:4). Moreover, the researchers withheld important information about penicillin that could have helped the subjects (Heintzelman 2003:4). Thus, the researchers failed to protect the subjects from possible risks and inflicted additional harm on them.
The second ethical research principle presented in the Belmont Report is respect for persons. Respect for persons implies that everyone has the right to autonomy, and those whose autonomy is diminished should be protected (US Department of Health, Education, and Welfare 1979). This principle was also violated during the Tuskegee Study as the subjects were not treated as autonomous agents capable of and entitled to make their own decisions concerning their treatment and participation in the study. They did not provide their informed consent, which included having full information about the research and fully understanding it (US Department of Health, Education, and Welfare 1979). The researchers used their African American subjects’ lack of knowledge and socioeconomic vulnerability, but the medical community dismissed this violation (Heintzelman 2003:4-5). They believed this ethnic group is prone to STDs and allowed racist unscientific beliefs to cloud their judgment (Heintzelman 2003:5). Thus, the subjects’ autonomy was diminished in this study, but they did not receive support and help from the medical community due to racist prejudice.
The third ethical research principle provided in the Belmont Report is justice. Justice is defined as the equal distribution of benefits and burdens among research participants (US Department of Health, Education, and Welfare 1979). According to it, one should not be denied the deserved benefits without good reason or be imposed with some burden unduly (US Department of Health, Education, and Welfare 1979). The participants of the Tuskegee Study were unjustly treated as they were burdened with the study’s risks and repercussions but did not receive available benefits any human being deserved. For example, they received heavy metals therapy, a standard treatment practice in 1932, but were denied penicillin in the 1940s without informing them of this option (Heintzelman 2003:4). The researchers claimed they were protecting the subjects from possible side effects that were not yet fully studied (Heintzelman 2003:4). It might be true, but they should have informed the subjects of such treatment, explained its essence, possible side effects, and suggested it as an additional option. However, they withheld this information even after the medical community knew it could safely treat syphilis. It became one of the reasons for the death of more than 100 participants from advanced syphilis (Heintzelman 2003:4). Moreover, the researchers and the subjects from a socioeconomically vulnerable group were not equal in this study. The latter lacked the knowledge to demand the deserved benefits, get rid of the undue burdens, or withdraw from the study in case of injustice. Therefore, the principle of justice was also violated in this study.
For the study you have chosen, can you think of a way to get similar data in an ethical way? If yes, explain how. If not, explain why. It does not matter whether you decide to say yes or no as long as you can support your decision. (probably about one page)
The Tuskegee Syphilis Study was designed to “determine the natural course of untreated latent syphilis in some 400 African American men in Tuskegee, Macon County, Alabama” (Heintzelman 2003:4). It is impossible to conduct the same study today in an ethical manner, as comprehensive research of untreated syphilis cases would inevitably require violation of the principles introduced in the Belmont Report.
First of all, it seems impossible to obtain informed consent for participating in such a study. According to the Belmont Report, informed consent includes having information about the study, comprehending it, and voluntarily agreeing to participate in it (US Department of Health, Education, and Welfare 1979). The study subjects had a latent form of a disease and were not informed of their condition (Heintzelman 2003:4). Realistically, if a person finds out about such a condition, they would want to get the most effective treatment within the shortest period of time. The researchers must find very compelling arguments for a patient to agree to leave the disease untreated for the time of research, which I cannot imagine.
Secondly, the researchers in the original study hesitated to suggest any additional and potentially useful ways of treatment. For example, they withheld information about the positive effect of penicillin in syphilis treatment (Heintzelman 2003:4). They wanted to see “the natural course of untreated syphilis” and disregarded the subjects’ deteriorating health and safety (Heintzelman 2003:4). Apart from that, the researchers studied “the neurological effects of syphilis,” and to do that, they injected “spinal tabs without anesthesia” (Heintzelman 2003:4). It also violated the principle of beneficence, as they did not mitigate the inflicted pain though it was possible. Therefore, modern researchers cannot study untreated syphilis without violating basic ethical principles.
References
Heintzelman, Carol A. 2003. “The Tuskegee Syphilis Study and Its Implications for the 21st Century.” The New Social Worker 10(4):4-6.
US Department of Health, Education, and Welfare. 1979. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.