Research Ethical Reflection

Research Ethical Reflection

Miss Evers’ Boys: The Tuskegee Study

“Some things you can’t do on account of you might get twisted up in your mind…” This, together with other statements made by nurse Eunice Evers represent the ethical dilemma that she endured during the fictionalized account based on The Tuskegee study of Untreated Syphilis in the Negro Male in 1932. This reflection is based upon Miss Evers’ Boys, a 1997 made for TV movie starring Alfre Woodard as Eunice Evers, R.N. and Laurence Fishburne as Caleb Humphries, which focused on the moral dilemmas she was subjected to because of her participation as a research assistant within the study. As an African American nurse, the role that Miss Evers had, transcended the purely medical and steps into the realms of trust in an era that was characterized by racial tensions in almost all spheres of life, in particular healthcare with her duties as a nurse.

Part 1

Based on the dramatized narrative, as well as my research of the actual accounts of the research it is based on, my initial feeling is that the subjects of this study, who were the men suffering from syphilis, were unfairly treated by the medical personnel. It is clear from the video that the study participants were not informed in advance of their enrollment. Their consent was not sought before the study commenced. This is not in line with patient autonomy that I believe should be a cornerstone to any meaningful health study. By denying them the penicillin treatment that had been proven to work in the treatment of syphilis, these men were deprived of the life-saving medications and treatment that they needed to survive (Gamble, 1997). The video also has salient references to a race-motivated reason on the way the Black participants were treated. This is seen in the testimony that Eunice Evers provides throughout the scenes in the movie representing congressional hearings which were held upon the uncovering of the unethical observational study being held over the course of 4 decades with the well-being of the participants largely ignored by the medical community.

The nurse in this situation played the reassuring role. Within the context of a racially charged environment, the study participants would only be confident of the treatment if they were counselled and advised accordingly. This needed the committed nurse to actualize. Eunice Evers additionally plays the mediating role that the nurse ought to perform in this situation, serving as the link between the patients and the doctors. It was upon her to convince the participants that the actions which the doctors preferred, such as spinal taps described to the men as special treatment and called “back shots”, would ultimately be for their benefit and help to alleviate or treat their “Bad Blood”. The nurse then had the role of comforter. It was her job to avert the men’s fears and convince the participants that the program was structured for their benefit. In many ways it appears that Nurse Evers was conflicted. However, she also showed pride in her role as a nurse and once she embraced the circumstances she was in, she did not waiver from her dedication to the study. She shows confidence in the opening scene as she defends Dr. Brodus and the study. She repeatedly states the men received excellent care and were taken care of far better than had they never been involved in the study. One must ask if this was a result of her conviction or a result of her moral distress which she endured for playing such an active role in what resulted in the deaths of many men unnecessarily from lack of treatment.

It is understood that role of the nurse in the 1930s had a markedly different part to play than present day nurses. Early nurses were to follow orders and were subservient to doctors rather than play the role of leader, problem solver, educator, researcher, and influencer of policy formation as the nurses of today do. (Susan, 2001). The nurse I propose would have presented an advisory role rather than a speculative one. Unlike Eunice Evers, my nurse would be much more involved especially with questioning the reason why the sick patients could not be given penicillin even when some were suffering deadly side-effects like blindness and even death. My nurse would engage with the patients, advocate for them, and provide room to make informed choices of either taking part in or becoming participants in a study that affects their health. Some of the men perhaps would have chosen to participate in a study of allowing the natural course of the disease process if allowed the benefits they were afforded such as other medical care, hot meals, and burial insurance.

This video will influence my role as a nurse researcher in the future in a variety of ways. I am already aware of the fact that in medical practice, evil can be perpetuated, and has been, for decades in the name of the “greater good”. While the greater good is undeniably important, it ought not to come at the expense of the health, safety, or autonomy of study participants. Depriving sick people of care that has been proved to be scientifically sound by systematically alienating them in the name of preparing them for the greater good defeats the very purpose of the healthcare system and research that seeks better understand the disease process to find therapies, treatments, and cures. In addition, the video will influence my commitment of care in terms of the cultural awareness for my patients (Susan, 2001). The fact that the focus of the researchers for the participants in this study was that they were Black raises questions of racism and the systemic indications that came with it. I would strive to deliver culturally sensitive care in every aspect of research. In addition, I would advocate strongly against any racist, marginalized treatment of any participants.

Part 2

The very first principle in The Belmont Report is the principle of beneficence. This means that no harm should be done to the patient and that their safety ought to be supreme. It is my belief that the medical staff and the decision-making voices within the public healthcare framework which established the study, as well as several medical professionals who failed to admonish the study upon reading the reports that were published throughout the years, should have applied the principle of beneficence in handling the study participants. By not treating the patients, the study exposed them to harm that was in fact, avoidable. This was proven by the fact that years after the study ended in 1972, the use of penicillin brought them relief from their complications with no notable side effects (Walker, 2009). During the video, it is also evident that the testing was done on the participants by those who were working with Miss Evers caused them a lot of harm, risk, and extreme pain. This was despite existing alternative treatments.

The second principle is the principle of justice. Justice has to do with the fair treatment of all people. This study as depicted in the video failed to ensure that the treatment of people met the standard of equality and fairness. This was in terms of racial equality and the obligation to treat patients equitably. One may argue as the video did point out that there were white men with syphilis among whom a similar study had been done before. However, the injustice was seen in the fact that while the previous data compiled on the white men was done during a time in which no known treatment was available for Syphilis, the Tuskegee study was done when some treatments were already available and, penicillin became a standard and effective treatment for Syphilis about a decade after the beginning of the study (Walker, 2009). Denying them treatment was a cruel inaction. The racial injustice then comes to the forefront. As Evers delivers her testimony, it is clear that the study had racial undertones to it. The racial injustices combined with the low education of participants fueled great injustices against the participants themselves. The fact that Nurse Evers herself was conflicted on the moral aspect of the study reiterates this fact.

Thirdly, the principle of respect for human dignity too was outlined by the Belmont Report (Epstein & Turner, 2015). Nurse Evers was already in a difficult situation. It was difficult for her to tell the whole truth about the study even if she indeed stood against the tenets of the study at a personal level. The patients had built trust in and no reason to disbelieve Nurse Evers. They trusted that the procedures they were undergoing were supposed to help them get well rather than test their response. To this extent, their human dignity was undermined. The dignity of these participants was not respected by the failure of the researchers to give informed consent to their patients. The patients were unaware that they were under any kind of observational study with the intent to allow their “bad blood” to ultimately take their lives; neither did they know the details of the study. The video also highlights instances when the privacy of the patients was undermined as well. The patients did not have their rights to privacy respected. For example, when the character Willie Johnson was taken by his friend Caleb Humphries for penicillin in another hospital and he could not get it because of their being participants in the stud, to which their consent was not sought. It can however be admitted that for this principle, at least, the standard practice at the time was not as clearly outlined as it is today. This has of course been much more clearly defined when the Health Insurance Privacy and Portability Act of 1996 was established preventing this sort of disclosure from occurring without a patient’s explicit consent.

In conclusion, Miss Evers role in the study was one that was undeniably important.  As her love interest stated to her “If you believe that (there’s nothing else you can do) you’d never have become a nurse in the first place” which leads to the conclusion that she believed her role to be one of great importance as well.  Without her assistance, there is much question as to whether the men would have participated at all. We can see the great influence that nurses can have on our patients in gaining their trust and cooperation, as well as on the resulting outcomes as represented in this video. While we may contemplate whether her participation was willing or coerced, or whether her motives were self-less or for self-preservation, it is undeniable that the outcome of the events of the Tuskegee Study is one that brought light to the issues and helped in establishing a foundation of principles to guide ethical standards within the treatment of medical research participants. For that, we must be grateful.

References

Epstein, B., Turner, M., (May 31, 2015) “The Nursing Code of Ethics: Its Value, Its History” OJIN: The Online Journal of Issues in Nursing Vol. 20, No. 2, Manuscript 4

Feldshuh, D., & Bernstein, W. (1997). Miss Ever’s Boys. Porterdale, Georgia, USA. United States; HBO NYC Productions. Retrieved October 22, 2021, from https://play.hbomax.com/extra/urn:hbo:extra:GYUDcrggWVm-dwgEAAAGM.

Gamble, V. (1997). Under the shadow of Tuskegee: African Americans and health care. American Journal of Public Health, 87(11), 1773-1778.

Susan M. R. (2001). More Than Fact and Fiction: Cultural Memory and the Tuskegee Syphilis Study. The Hastings Center Report, 31(5), 22–28.

https://doi-org.waylandbu.idm.oclc.org/10.2307/3527701

Walker, C. (2009). Lest we forget: The Tuskegee experiment. Journal of Theory Construction & Testing, 13(1), 5-6