Ethics in The Healthcare Setting: Tuskegee Syphilis Study

As patients place their trust in healthcare professionals, they possess a great responsibility to ensure proper care. With this responsibility, it is a sad reality that the government failed to apply ethics during the Tuskegee study in Alabama. Lasting from 1932 to 1972, this study experimented with 400 poor African American men who suffered from syphilis (The Deadly Deception, 2019). Misled by the government, participants were told they needed treatment for ‘bad blood’ and were offered incentives like free healthcare to continue in the study. As the study progressed, treatment was withheld, causing the health of every participant to decline. Ethics is an essential of healthcare because it allows for effective and beneficial care. Without ethics, the healthcare experience for patients becomes detrimental as dangers arise within the patient’s experience. This study was flawed according to ethical principles and the Universal Declaration of Human Rights. The Tuskegee study relates to the Nuremberg Code and the Belmont Report which sought to improve ethics in the healthcare setting.

Ethical Principles

The men involved in the Tuskegee syphilis study did not experience respect for persons, beneficence or justice. Respect for persons or respect for human dignity revolves around a person’s right to self-determination and their right to full disclosure (Polit, 2018, pdf.175). This refers to how participants should have the freedom to engage in a study without the risks of detrimental treatment. The right to understand what’s happening by questioning and aborting from engagement also applies without persuasion. Full disclosure promotes making informed and fair decisions in research participation by enclosing side effects and the option to quit the study. Lack of coercion or bribing and blackmailing is also prohibited because it obstructs from free will and puts pressure on making a decision that may not align with someone’s true intentions.

Of the 400 African American men who were apart of this study, none received their right for respect of human dignity. Important information like an in-depth briefing of the procedures was withheld. The men were told that they would be treated for Syphilis at no cost if they participated. This is a form of coercion because incentives and bribes of free healthcare incline patients to participate without the proper information. In the long run, they were never treated for syphilis in this study. They also weren’t informed about the actual purpose of the study, associated risks, nor the procedures that were being performed. Another example of disrespect was how a letter was sent out, falsely stating how a spinal tap was additional treatment needed to treat Syphilis. This was done to perform more tests on the men. This shows manipulative intent and lacks respect for patient integrity and the right to be properly informed. Additionally, they were offered $50 dollars of health insurance to continue involvement with the study (The Deadly Deception, 2019). This is another form of coercion by persuading patients to engage with the poorly described Tuskegee study.

Another important factor to consider with the Tuskegee study was the absence of beneficence. Beneficence includes ensuring rights of prevention of exploitation and freedom from discomfort and harm. This act also seeks to minimize harm and maximize beneficial aspects within the healthcare process. Researchers have the obligation of not using information against patients and conducting experiments intended to produce benefits for patients. One example of how beneficence was not applied was how the Tuskegee men weren’t offered penicillin which was recommended to treat syphilis. Although having the knowledge of what helps fight syphilis at the time, the researchers looked to exploit and take advantage of how the men lacked knowledge of what was best for their health. Minimizing harm would have also meant using penicillin because it was known to fight the complications brought by syphilis.

The Tuskegee study in many ways was an abandonment from justice. This principle implies the right to fair treatment and the right to privacy. One way justice was violated was how the participants were explained the study would last 6 months. Instead, it prolonged to about 40 years. This unfair time difference also reveals a lack of transparency which is crucial as this involves the negligent and malicious intent of researchers. Another example showing why the Tuskegee study was unjust was how the study targeted Tuskegee men based on the vulnerability of poverty. It was also involving only black and not white people with syphilis which shows a discriminatory bias. This is important to consider because it relates to education levels and their awareness to protest immoral conduct involving the Tuskegee study. A violation of privacy was also done by the Tuskegee study as they shared information with major medical journals and the U.S Congress throughout the 40-year period without the consent of patients (The Deadly Deception, 2019).

Nuremberg Code and the Belmont Report

The ethical principles of respect for persons, beneficence, and justice are stated in the Belmont Report which was established to increase ethics in healthcare practices since 1978. These ethical principles helped provide a standard across organizations in the United States and were established by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (Polit, 2018, pdf.171). Situations like the Tuskegee study raised awareness of the lack of ethics in healthcare which may have influenced regulations like the Belmont Report to be established.

Another form of regulation is the Nuremberg Code of 1947 in response to the Nazi doctor atrocities that were revealed in the Nuremberg trial. There are ten points that were implemented regarding the Nuremberg Code. The first and most significant point made was that anyone who participates in an experiment or study must give informed consent (The Nuremberg Code, 2018). The subject should have the capability to provide consent. It is required that a enough information is given clearly enough for the subject to comprehend and consent or decline to. The Nuremberg trials were held in attempts to convict Nazi doctors who performed inhumane and unethical experiments on concentration camp captives (Science Museum). Unfortunately, the Nuremberg code was not considered with the Tuskegee Study. During the time the code was introduced, penicillin was found to be an effective treatment for syphilis. The Tuskegee government scientists dismissed the relevance of the Nuremberg Code. They proceeded to withhold treatment from the men even after penicillin was recognized as treatment knowing this neglect could harm and potentially kill participants.

Universal Declaration of Human Rights

Established in 1948, the Universal Declaration of Human Rights (UDHR) was violated by the continuation of the Tuskegee study’s unethical practices. This declaration was made to ensure a standard of ethics and rights for people of all nations. One of the rights violated by the Tuskegee was subjecting patients to cruel and degrading treatment which is prohibited by Article 5 of the UDHR (UN, 2019). The Tuskegee study also violated Article 27 of the UDHR which grants protection of moral and material interests in scientific involvement (UN, 2019). The Tuskegee study failed to question or consider the moral interests of its participants.

Eunice Rivers was the nurse shown in the Tuskegee film who provided care and monitor the complaints of subjects. Her main role was gathering participants for annual roundups when the doctors arrived at Tuskegee (The Deadly Deception, 2019). In my opinion, as a nurse, there is a priority to advocate for the people you take care of. She was not advocating for the men and their circumstances. Despite not having the modern approaches of today, she was still educated enough as a nurse to know about the harmful effects and information regarding the study. She also played a role in restricting men from access to penicillin. She should have questioned her actions as well as scientists and other healthcare personnel which is needed to take the ethical approach as a nurse in this situation.

Researching practices in the Tuskegee era differ from today mainly with increased regulation. For a large part of the early to mid-20th century, there were no standards for medical organizations to abide by. This wasn’t really introduced until the Belmont Report, Declaration of Human Rights, and the Nuremberg code were established to counter the unethical habits of healthcare practices. As of today, regulation has continued to evolve, and things have gotten more complex to ensure patient safety. One example of today’s improvements is the disclosure of rights and informed consent which is expressed to patients before participating in research. The confidentiality of participants is also strongly enforced, making patient information more secure. Communication with patients has improved including consideration for their concerns and stressors regarding healthcare. This makes an essential improvement compared to practices from the Tuskegee era. The two time periods relate because there is still room for improvement when it comes to serving a diverse population. Without confronting the issues of the past, today wouldn’t include the numerous precautions and safety practices in healthcare.

Conclusion

Given the dire responsibility of healthcare providers, the Tuskegee study proved that there was a need for regulation. Informed consent and other rights such as the right to decline a study began to be enforced after the Tuskegee study as regulations from the UDHR, Nuremberg Code and the Belmont Report were later established. The important thing to take away from mistakes of the past is to avoid engaging in similar patterns that neglect patients. Additionally, having an open-minded approach while following ethical principles in the healthcare setting would prevent situations like the Tuskegee study from happening again.

References

1. Documentary Addict. (n.d.). The Deadly Deception. Retrieved from https://documentaryaddict.com/films/the-deadly-deception.
2. Polit, D. F., & Beck, C. T. (2018). Essentials of nursing research: appraising evidence for nursing practice (9th ). Philadelphia: Wolters Kluwer.
3. Science Museum. Brought to Life: Exploring the History of Medicine. (n.d.). Retrieved from http://broughttolife.sciencemuseum.org.uk/broughttolife/techniques/nurembergcode.
4. THE NUREMBERG CODE. (2018). Retrieved from https://history.nih.gov/research/downloads/nuremberg.pdf.
5. UN (United Nations). (2019). Universal Declaration of Human Rights. Retrieved October 20, 2019, from https://www.un.org/en/universal-declaration-human-rights/index.html.