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MEDS6013 Research and Evaluation in Health

Introduction

Research is conducted to establish facts so that it can be reached to a conclusion. The Tuskegee Study of Untreated Syphilis in the Negro Male was a study that was conducted by the US Public Health Service and the Tuskegee Institute in 1932. The researchers initially recruited 600 African American men, 399 with syphilis and 201 who did not have the disease. The study was conducted without the benefit of the patient’s informed consent. Researchers told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anemia, and fatigue. In truth, they did not receive the proper treatment needed to cure their illness. The study went on for 40 years, despite the discovery of penicillin as an effective treatment for syphilis in the 1940s.. The research ethics values will be discussed in this report. Along with this, the changes in research ethics will be mentioned in this report.

Summary

The Tuskegee Study of Untreated Syphilis in the Negro Male was conducted from 1932 to 1972 by the US Public Health Service. The study aimed to record the natural history of syphilis in African American men, with the hope of justifying treatment programs. The study included 399 participants, 201 of whom had previously contracted syphilis before the study began, and 198 who did not have syphilis at the start. Despite the availability of penicillin as a treatment for syphilis in the 1940s, the participants were not informed about the availability of the drug and were not provided with treatment (Attia, 2021). The study continued until it was exposed in 1972, resulting in public outrage and widespread condemnation. The study is widely considered one of the most egregious examples of ethical misconduct in research. It serves as a cautionary tale for researchers to ensure that studies are conducted ethically and with the utmost care for human participants (Brawley, 1998). This unethical study has had a significant impact on research ethics, leading to the development of guidelines and regulations to protect human research participants. The study is a stark reminder of the importance of upholding the ethical principles of research, particularly the principle of respect for persons, in order to protect the rights and dignity of research participants.

Research ethics value: Respect for persons

The first value of research ethics, respect for persons, is particularly relevant to the Tuskegee Study. This value recognizes the inherent dignity of all human beings and requires that research participants be treated with respect and as autonomous individuals. In the Tuskegee Study, this value was grossly violated, as the participants were not treated with the respect they deserved. The study was conducted without the informed consent of the participants (Coughlin, et al., 2022). The men were told that they were being treated for “bad blood” and were not informed of the true nature of the study or its purpose. This is a clear violation of the principle of informed consent, which requires that participants be fully informed of the nature and purpose of the study and provide their voluntary consent to participate. Apart from this, the participants were not treated as autonomous individuals, as they were not given the opportunity to make informed decisions about their own health. The study continued for 40 years, during which time the participants were denied access to effective treatment for syphilis, even after penicillin became widely available in the 1940s (Heintzelman, 2003).

The researchers involved in the study also failed to protect the privacy and confidentiality of the participants. The participants’ names and medical records were not kept confidential, and the results of the study were published without the participants’ consent. The Tuskegee Study also violated the principle of justice, which requires that the benefits and burdens of research be distributed fairly. The study was conducted on a vulnerable population that was already marginalized and disadvantaged (Margolis, & Margolis, 2013). The participants were not given access to the same level of care that would have been provided to white patients, and they were not given the opportunity to benefit from the new treatments that were becoming available.

After having all the discussion, it is clear that the Tuskegee Study of Untreated Syphilis in the Negro Male was a clear violation of the first value of research ethics, respect for persons. The study failed to treat the participants with the respect they deserved as autonomous individuals, and their rights to informed consent, privacy, and confidentiality were violated. The study also failed to distribute the benefits and burdens of research fairly, as the participants were not given access to the same level of care that would have been provided to white patients (Mata, & Lora, 2016).

Research ethics value: Beneficence

One of the key ethical values in research is beneficence, which refers to the obligation of researchers to maximize potential benefits and minimize potential harm to research participants. The Tuskegee study is a clear violation of this principle. The participants in the Tuskegee study were not provided with adequate medical treatment for their syphilis, even though penicillin had become widely available as a cure in the 1940s. Instead, the researchers chose to withhold treatment from the participants in order to continue studying the natural course of the disease. This decision not only violated the principle of beneficence but also the principle of non-maleficence, which states that researchers should not cause harm to research participants. Apart from this, the participants in the study were not fully informed of the nature of the study or the potential risks involved (Ogungbure, 2011). They were told that they were receiving treatment for “bad blood,” a vague and misleading term that did not accurately describe their condition or the purpose of the study. This lack of informed consent violates the principle of autonomy, which states that individuals have the right to make their own decisions about their participation in research.

The Tuskegee study also violated the principle of justice, which requires that the benefits and burdens of research be distributed fairly among all members of society. The participants in the study were all African American men who were living in poverty and had limited access to medical care. They were chosen as research subjects in part because they were considered “uneducated” and therefore less likely to question the nature of the study or the adequacy of their medical treatment. This selection process was discriminatory and exploitative. The unethical nature of the Tuskegee study was not fully recognized until the 1970s when a public outcry led to the termination of the study and the establishment of new regulations to protect human research subjects (Pritchard, & Goldfarb, 2000). However, the harm caused by the study continues to resonate in the African American community, where it has contributed to longstanding mistrust of medical research and healthcare institutions. After having all the discussion, it is clear that the Tuskegee study represents a clear violation of the ethical principle of beneficence, as well as other fundamental principles of research ethics. The failure to provide adequate medical treatment to the participants, the lack of informed consent, and the discriminatory selection process all contributed to the harm caused by this study.

Changes in research ethics

The Tuskegee Study of Untreated Syphilis in the Negro Male is a well-known example of a highly unethical research study that resulted in significant changes in international research ethics practices. The study was conducted by the United States Public Health Service between 1932 and 1972 and involved withholding treatment from African American men who had syphilis, without their knowledge or consent, in order to observe the natural progression of the disease (Reverby, 2022). The investigation into the study led to the development of the Belmont Report in 1979, which outlined the principles of respect for persons, beneficence, and justice, that should guide research ethics.

Additionally, in 1989, the World Medical Association adopted the Declaration of Helsinki, which included specific guidelines on informed consent, risks and benefits of participation, and ethical review of research protocols. The Tuskegee study also resulted in the development of national ethics guidelines, such as The National Statement on Ethical Conduct in Human Research in Australia, which provides detailed guidance on ethical research practices. Furthermore, the study led to changes in federal regulations in the United States, including the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1974, which oversaw the development of ethical guidelines for research involving human subjects (Rogers, 2023).

Conclusion

The Tuskegee Study of Untreated Syphilis in the Negro Male was a research study conducted by the US Public Health Service and the Tuskegee Institute in 1932. The researchers initially recruited 600 African American men, 399 with syphilis and 201 who did not have the disease. The study was conducted without the benefit of the patient’s informed consent. The study aimed to record the natural history of syphilis in African American men, with the hope of justifying treatment programs. The first value of research ethics, respect for persons, is particularly relevant to the Tuskegee Study. This value recognizes the inherent dignity of all human beings and requires that research participants be treated with respect and as autonomous individuals. One of the key ethical values in research is beneficence, which refers to the obligation of researchers to maximize potential benefits and minimize potential harm to research participants. The Tuskegee study is a clear violation of this principle.

Reference

Attia. (2021, November 12). What is the Tuskegee Study? Retrieved March 21, 2023, from https://www.plannedparenthood.org/blog/what-is-the-tuskegee-study

Brawley, O. W. (1998, January). The study of untreated syphilis in the negro male. Retrieved March 21, 2023, from https://pubmed.ncbi.nlm.nih.gov/9422551/

Coughlin, S. S., Etheredge, G. D., Metayer, C., & Martin, S. A. (2022). Remember tuskegee: Public health student knowledge of the ethical significance of the Tuskegee Syphilis Study. American Journal of Preventive Medicine, 12(4), 242–246. https://doi.org/10.1016/s0749-3797(18)30319-2

Heintzelman, C. A. (2003). The Tuskegee Syphilis Study and Its Implications for the 21st Century. Retrieved March 21, 2023, from https://www.socialworker.com/feature-articles/ethics-articles/The_Tuskegee_Syphilis_Study_and_Its_Implications_for_the_21st_Century/

Margolis, L., & Margolis, G. (2013, August 15). A New Tuskegee Experiment? Retrieved March 21, 2023, from https://www.insidehighered.com/views/2013/08/15/essay-compares-letting-people-play-football-tuskegee-experiment

Mata, R. C., & Lora, F. (2016). Tuskegee Syphilis Experiment. Retrieved March 21, 2023, from https://www.sciencedirect.com/topics/medicine-and-dentistry/tuskegee-syphilis-experiment

Ogungbure, A. A. (2011, December 2). The Tuskegee Syphilis Study: Some Ethical Reflections. Retrieved March 21, 2023, from https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwifud7nou39AhWBXnwKHRPHD3AQFnoECBkQAQ&url=https%3A%2F%2Fwww.ajol.info%2Findex.php%2Ftp%2Farticle%2Fview%2F74876%2F65465&usg=AOvVaw3NSVyJEUxQLp1g1NY3fRMb

Pritchard, M., & Goldfarb, T. (2000). The Tuskegee Syphilis Study. Retrieved March 21, 2023, from https://onlineethics.org/cases/ethics-science-classroom/tuskegee-syphilis-study

Reverby, S. M. (2022). The Tuskegee Syphilis Study. Oxford Research Encyclopedia of American History. https://doi.org/10.1093/acrefore/9780199329175.013.1032

Rogers, K. (2023). Tuskegee syphilis study. Retrieved March 21, 2023, from https://www.britannica.com/event/Guatemala-syphilis-experiment

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