Nurses and the medical fraternity most often than not get confronted by ethical dilemmas and quagmires that in essence ascertain the moral compass of the physicians and nurses. Nonetheless, the medical practice succinctly ensures that new practitioners take the Hippocratic Oath and swear to maintain the code of ethics as they relate to their practice. As such, this code of ethics serves as a guideline for the practicing nurses and other medical practitioners where their conduct and practice is scrutinized under the confinements of the ethics. In the same manner, this code of ethics also suffices when medical researchers undertake studies that involve human participants. One of the world’s most remembered unethical and immoral human experiment, especially by the US is the Tuskegee Study between 1932 and 1972. In this regard, the paper aims at providing a detailed articulation and discussion of the ethical considerations in research involving human participants through the perspective of Miss Evers’ Boys film. The ethical considerations to be discussed here include the function and importance of the IRBs, fundamentality of informed consent, and ethical principles in medical research.
Type of Research in the Tuskegee Study
The type of research employed in the Tuskegee study was a quantitative research study. According to the film, the study started as a six-month descriptive epidemiological research meant to ascertain the long-term effects and pathological progression of untreated syphilis among the African American males from Macon County, Alabama. In essence, this makes the study quantitative because descriptive study and research is a subset of the quantitative design. Furthermore, the research design was experimental involving human subjects who were divided into control and experimental units. Subsequently, observation as a design method or techniques was employed whereby the placebo and other irrelevant treatments were administered to the subjects to observe the natural progression of the disease. Also, as a quantitative biomedical research study, the film illustrates how data regarding the progression of the study and the disease was constantly passed along and published to the medical community, especially to the US Public Health Study of Syphilis, CDC, and the Tuskegee Institute as the primary overseers of the study.
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Involvement of the IRB
The IRB and other ethics committees are essentially mandated with protecting human subjects in a medical research study or any other study involving human participants. According to Grady (2015), IRBs fulfill this mandate through periodic and advanced independent review of the ethical acceptability or tolerability of proposals for human research. In this regard, the Tuskegee study took place between 1932 and 1972 when it was shut down on the basis of moral and ethical issues. Indeed, the Tuskegee study did not go through an established Institution Review Board before its onset. The only regulation and condition for the conduct of the study by the overseeing institutions, especially the CDC were not to harm the human subjects.
As such, the advent of the IRBs and other review committees followed the termination of the study in 1972 after an ad hoc advisory panel was invited by the CDC to review the study. After the panel’s investigation, even though the participants had agreed to certain terms of the experiment such as examination and treatment, the study was deemed medically unjustified and unethical and was, therefore, terminated. This thus demonstrates the fact that ad hoc, the closest thing to an IRB at the time, reviewed the study at its end rather than at the beginning as required.
Provision of Informed Consent
Informed consent as described by Manti & Licari (2018) is a process where a human subject or participant voluntarily confirms his or her willingness to take part in a particular clinical trial or study subsequent to being informed of all the aspects of the trial relevant to the research. Indeed, in the Tuskegee study, the participants provided their consent to participate not because they understood the full metrics and elements of the study but because they were lied to and given half-truths and misleading statements regarding the research. For instance, to ensure participation and consent, the doctors sent letters that unequivocally stated “last chance for special free treatment,” which saw participants provide consent only for examination and treatment (Sergio & Pascual, 2015). However, as Miss Evers later on testified, the participants were never told that they were participating in a study and neither were they informed they were not receiving treatment on the fear of what would happen if they were given such information. It was on this basis and other ethical considerations that the ad hoc advisory panel called for the termination of the study.
Ethical Principles
The three main ethical principles or philosophies applicable in the Tuskegee study are Justice, Beneficence, and non-maleficence, which were all violated. The principle of justice thus maintains that no single cohort of individuals should be unfairly singled out for reasons based on race, gender, or socio-economic status. As such, as per the nursing guidelines under this principle, care should be offered equitably and fairly among all groups of patients, a precept that the Tuskegee physicians, and in particular Miss Evers violated by denying the syphilitic patients’ penicillin treatment even from other institutions. The second principle of beneficence refers to doing good and the right thing for the patient. This means that the health of the individual takes precedence over the research objective or purpose, and as such, all risks should be considered and succinctly minimized. Under the nursing guidelines, this principle is incorporated in the assertion that nurses should maintain and enhance physical, mental, social, and spiritual abilities of the patients (Zahedi et al., 2013). This was violated in the Tuskegee study when the patients were observed for the natural progression of the disease to their death without intervention or treatment.
Ultimately, non-maleficence as the third fundamental principle essentially means doing no harm whether intentionally or inadvertently. This is a central tenet of the Hippocratic Oath and the nursing ethical guidelines. The principle deductively refers to the provision of the best care possible for the patient based on professional standards and prevents probable damage to the patient (Zahedi et al., 2013). In the Tuskegee study, by offering ineffective and toxic treatments in lieu of penicillin, the physicians harmed the participants of the study. It is perhaps the violation of this principle and that of beneficence that Nurse Evers occasionally decided to steal treatment for the patients to prevent progression of the disease because these principles bound her as a nurse.
Conclusion
The Tuskegee study is among the most notably unethical human experiments in history. The study violated all ethical and moral standards propagated and enabled by government support. As observed in the film, the CDC and other institutions such as the Tuskegee Institute agreed to the full conduct of the experiment on the rationale that it was meant to benefit humanity. Furthermore, there was abounding support of the experiment as well as CDC’s objective from national bodies and the government such as the National Medical Association that represented the African American physicians and the American Medical Association. Regardless of the negative implications of the study, a positive that could be drawn out of the ordeal is the development of regulations, review committees, and IRBs that govern and regulate clinical trials and research involving human participants. Indeed, given the sanctity of human life and health, such experiments should not be condoned or accepted if humanity is to transcend.
References
Grady, C. (2015). Institutional review boards: purpose and challenges. Chest , 148 (5), 1148-1155. DOI: [10.1378/chest.15-0706]
Manti, S., & Licari, A. (2018). How to obtain informed consent for research. Breathe , 14 (2), 145-152. DOI: 10.1183/20734735.001918
Sergio, P. & Pascual, J. (2015). Miss Evers’ Boys. YouTube . Retrieved from https://www.youtube.com/watch?v=nHP1p9bRQ3Q
Zahedi, F., Sanjari, M., Aala, M., Peymani, M., Aramesh, K., Parsapour, A., ... & Dastgerdi, M. V. (2013). The code of ethics for nurses. Iranian journal of public health , 42 (Supple1), 1-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3712593/pdf/ijph-42-1.pdf
