The film “Miss Evers’ Boys is a shining example of how unethical medical research used to be allowed due to the lack of knowledge and structure of research projects. The film documents the Tuskegee experiment which was a study of negro men in Alabama from 1932 to 1972 who did and did not have syphilis. The study was originally started to find a treatment/cure for syphilis but due to lack of funds turned into a study of effects of long-term, untreated syphilis. The purpose of this paper is to show examples of why breaches were made in basic human rights in today’s standards and how it paved the way for ethical standards.
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The Tuskegee experiment is a shining example of how Miss Evers breached the basic right of self-determination. The right to self-determination is when “participants must be treated as autonomous agents with the right to choose to participate or to not participate, and the freedom to withdraw from a study at any time without penalty” (Mick). One example of how it was breached is the lack of informed consent. Informed consent means that participants have adequate information about the research, can comprehend the information, and have a free choice in deciding whether to participate in or withdraw from the study when all risks and benefits are disclosed. This would mean that participants also have the opportunity to ask any questions and withdraw at any time. For an informed consent to be rightfully given today, the individual must be competent to give consent and must not be under any duress or coercion – which means they must voluntarily consent. Miss Evers Boys’ breached this principle because the subjects were never specifically told that they had syphilis or about the course of the disease. They were also never consulted about what possible treatment options were available. However, in the society that Miss Evers was living in it was not necessary for them to obtain informed consent.
The principle of truth was not used by Miss Evers like it is today. The use of truth-telling implies that there is communication between a health care professional and a patient. In medical ethics, truth-telling is an act of providing accurate information to persons who are going be participants in research, whether it be therapeutic or not. Truth-telling is important in the medical world because it builds the base of an effective relationship and is a way to foster trust and respect with the patients. From the beginning of the Miss Evers’ Boys movie, the Tuskegee participants were not told the truth. The boys were lied to and lured with incentives such as free hot meals, free bus rides, free placebo treatments, and money. The lack of truth-telling also ties back to the lack of informed consent because an informed consent requires the participants to be fully informed about all aspects of the research. As pointed out earlier, without informed consent the whole study becomes unethical. However, Miss Evers was not purposefully lying to the men. Back then it was common for nurses to follow orders from doctors without any questions. So, in these terms Miss Evers was doing her duty inside her scope of practice to the men. She was informing them of everything she could. She did this by explaining terms on their level. This is evidenced by when she explained to them what Syphilis was in terms that they would understand instead of just “bad blood.”
The lack of informed consent also falls along with the lack of principle of respect for persons which falls along with today’s Fair Treatment right. This principle states that (1) self-determination (participation and withdrawing) should be allowed for all the participants, (2) no coercion is allowed in the decision of participants to participate, (3) full disclosure is given to participants with no deception involved, (4) voluntary consent of all participants, and (5) persons with diminished autonomy have special protections. This principle was breached by Miss Evers because the boys were not allowed to withdraw during the study, coercion was used by Miss Evers in the way she phrased all the treatments and what the study was doing for the boys, full disclosure about the disease and what would/was happening to the boys was not given to them, the boys did not consent, and none of the men had special protection.
Protection from Right to Harm
The second ethical principal that was violated was fidelity. Fidelity is the duty to keep agreements, commitments, and carry out care. In this way, Miss Evers kept her agreement of commitment to the project and carrying out care. However, she violated the Nursing Code of Ethics when the study changed from the original agreement of giving them treatment to giving the boys a placebo treatment. Fidelity also requires loyalty, fairness, truthfulness, advocacy, and dedication to the patients. It involves an agreement to keep promises. Part of this was followed by Miss Evers as she was loyal and dedicated to the boys. However, she was also not fair or truthful to them during their placebo treatment and she should have been more of an advocate for them with the right to have Penicillin as a treatment.
Another Nursing Code of Ethics principle that was violated was the principle of beneficence. Beneficence is the freedom from harm and exploitation with consideration of the risk/benefit ration. It requires researchers to “weigh the benefits and risks of a research project by conducting a risk assessment that considers both physical and nonphysical harm” (Mick). This ethical principle was violated because the boys (uneducated blacks) were used as guinea pigs in the research. The trial became not about giving any therapeutic means such as a cure or control for syphilis but more about showing that blacks and whites were medically the same.
The unnecessary spinal taps were presented to be boys as “spinal shots” which was a deceptive play on words which suggested that the lumbar puncture had some therapeutic purpose instead of just being an unnecessary test.
Why different standards were accepted back then
In Miss Evers opinion, she was following the duty of the Florence Nightingale’s Pledge of 1893. The oath:
“To do all in my power to maintain the standard of the nursing profession;
To endeavor with loyalty to aid the physician in his work;
To devote myself to the welfare of those patients committed to my care”
was the ethical background to which Miss Evers pledged her life to. She used this as a justification point for her participation in the Tuskegee experiment and with the involvement of withholding available treatment and lack of informed consent. From the beginning of the movie, Miss Evers is troubled by how the research project is going. She questions all the injections and rubs that the boys are receiving. She is disturbed that the boys are not being told the truth and it is justified by the doctors due to the lack of education and fears. It is with her experience with Caleb that Miss Evers finds more questions about herself and her work. However, due to the time Miss Evers listens to the word of the doctors and believes that the penicillin shot holds a high risk to the men. These examples all show that although in today’s standards Miss Evers did not follow the five basic human rights, she seems appropriate in her judgement for the time this was occurring in.
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The Tuskegee Syphilis study was an unethical study that showed how nurses and doctors neglected the medical oath to save lives and decided to experiment with human lives. However, Miss Evers did follow the basic human rights that were true to the situation of in those days. She is faithful at keeping the boys in the program and at providing them a shoulder when they were afraid for the lumbar punctures. She was the one person in the movie that could make the boys believe that they were receiving medical care that was helping them. She also aided in the five human rights because the Tuskegee project laid the groundwork for why the Protection of Human Subjects Law was passed in 1981 (Mick).
- Mick, J. (2019). Protecting the rights of patients, nurses, and others participating in research. Nursing, 49(7), 26-36.
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