In the film Deadly Deception, the audience is taken on a journey from the early 1930’s to the early 1970’s in a small town in Alabama. In the small town, we learn that a research study was conducted on young black men. These men were told that they were being treated for “bad blood” (Deadly Deception, 1993). The men had no real understanding of what “bad blood” meant. And were not made aware of the research that was really going on. In fact, the medical team was studying syphilis in black men. The men had no qualm over the study because they were promised free medical exams, free meals, and burial insurance. (Tuskegee Study – Timeline – CDC – NCHHSTP, 2015). The government medical staff would do all types of test on these men without giving them a real reason as to why they were do them. One of the tests was a lumber puncture.
The doctors wanted to determine the origin of the disease. They advertised the test as a “very special free treatment” (Deadly Deception, 1993). This deception allowed the doctors to do as they please disregarding their patients. They discovered that black men suffered just as equally as white men who have syphilis. It exposed the truth that diseases were not differentiated based on skin color (Deadly Deception, 1993). Instead of the study lasting the allotted six months, it continued on for more than forty years until a newspaper article exposed the truth of the study (Tuskegee Study – Timeline – CDC – NCHHSTP, 2015).
Ethical Principles
Ethical principles when conducting research, especially on human subjects, is crucial. Shake Ketefian, a nursing professor at the University of Michigan, states “research is scientifically sound while being respectful toward human beings who participate in such studies, recognizes human dignity and does not jeopardize their health in any way” (Ketefian, 2015). People have the basic right of understanding of what they are being tested for and not to go into it blind. She continues to write, “The focus of existing guidelines is to protect research participants from harm, whether physical, mental or social in nature” (2015). Having basic guidelines to consign with ethical principles of participants in a research study is crucial. Participants need to be able to benefit from the research they are partaking in, and if that is not the case, their ethical rights are being threatened. This is what happened to the men who thought they were being treated for “bad blood” but were really being tested for something else (Deadly Deception, 1993). The men in the study had no real idea on what the research was about, and the medical staff did not feel inclined to tell them what they were doing. That in itself was taking the basic rights of a person to decide whether they want to continue with the study or not. Not only that, the men in the study were not even being treated for syphilis and were dying without knowing that there was an antidote that can dormmate the disease from flaring up (Tuskegee Study – Timeline – CDC – NCHHSTP, 2015). Jay Katz (1992) states a similar principle in regard to the Holocaust. He states … a golden opportunity was presented to Nazi physician-scientists: to extend the frontiers of knowledge, to search for ultimate truths without constraint. Scientific questions of importance to unraveling the mysteries of life and illness could now be directly answered by using human beings as test animals. The ideology of science demanded that the opportunity be seized, since the human animals involved were worthless… (p. 253).
Similar to the Nazi’s, the medical team in Alabama felt that it was their moral obligation to study black men who suffer from syphilis and understand the disease in its entirety. They felt that they had no need to bother with the specifics and what the test was really about with men who they felt were not at the same intellectual level as them (Aközer & Aközer, 2016).
Nuremberg Code of 1947 and Belmont Report
Paul Weindling (2015) discusses the inhuman research the Nazis carried out during the Holocaust without the consent of their “subjects”. He writes, “The fact that victims did not volunteer or consent to the experiments” (p. 261). And continues to write, “Typhus, transmitted by infected lice, was denounced as a “Jewish fever’” (p. 261). In both statements, the “subjects” the Nazis were experimenting did not only not know what the tests that were being done to them, but also did not have the allowance to say no in partaking in the research. Like the men in the Tuskegee study, they were told that the disease was something that is normal only in their population, and therefore must be researched and treated for. The subjects in both trials did not have given their consent freely, which goes against the ethical principles of creating a research project (Weindling, 2015).
The Belmont Report of 1979 was created for the “basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects and developing guidelines to assure that such research is conducted in accordance with those principles” (HHS.gov, n.d.). Having the basic principles and rights of a human subject known is crucial in any study. It demands the rights of the subjects to be clear. The report declares that subjects are to be made aware of what the research they are partaking in will entail and decide whether they want to further their participation in the research. This is contradictory of the Tuskegee study. The men in who were involved in the Tuskegee study did not know what the true nature of the research was and therefore did not truly give their consent to the tests (HHS.gov, n.d.).
Universal Declaration of Human Rights
The treaty created in 1948, affirms that everyone has the basic human rights and respect of others. Article 25 of the treaty states, “Everyone has the right of standard living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services” (Humphrey, Roosevelt, Cassin , Chang, & Mehta, 1948). The medical team manipulated this article to justify their research of the men. They felt that because they were giving these men free health exams, and money for food, that it was okay not to tell them why they were going through all the harsh testing. They disregarded article 27 which starts with “Everyone has the right freely…”. “Freely” emphasizes that the men in the Tuskegee study should be allowed to freely choose whether they want to continue with the study after knowing all the facts of the study (Humphrey, Roosevelt, Cassin , Chang, & Mehta, 1948).
Violating the basic rights of a person, makes the Tuskegee study unethical and illegal in the eyes of the declaration. It is therefore should have been dismembered (Humphrey, Roosevelt, Cassin , Chang, & Mehta, 1948). Jean Heller, a journalist with The New York Times, wrote an exposé about the true natures of the Tuskgee study and its imoralities that occurred in the forty years of the study. She quoted Dr. Millier from the Center of Diease Control. He disclosed that the the study was “a serious moral problem”, especially after penicillian was found to treat the early stages of syphilis. At that point, the study should have been stopped and the men treated for early stages of syphilis. The study was not discontinued because the lack of research or neccesity of the study, but rather the immorality and violation it possesed, that caused the termination of the study (1972, p. 1).
Eunice Rivers Laurie
Eunice Rivers Laurie played a crucial role in the Tuskgee study. Without her, many of the men would not have joined the study. That caused a rifted between her two worlds, her race and her medical world. She coddled the subjects so that they would feel more comfortable with the white doctors who prodded (Kearns, 1970). Many question Nurse Rivers and her involvment in the study. How can a nurse who has an ethical duty to report anything nonethical to the proper authority? The simple answer is finance. Living in the South in the early 1930’s as a black woman made it difficult to find a well paying job. To her, she saw it as a way to make money to support her family, no matter how unethical it appeared. It was about survival of the fitest, and without the money that she was given, it would have been harder for her to feed and clothe her family (Bernal, 2013).
It is hard to say what I would do in the same situation as Nurse Rivers. I understand that she was trying to survive in a world that was prejudice because of the color of her skin. She had to straddle her two worlds, her everyday life world and her medical world. In the end her everyday world won. “When she begins working with them, and working with a government agency making good money, it’s going to affect how she approaches things”. She admitts that she continued in the study because of the money. I do not fault her in her logic, however, I do fault her that after the Depression and the creation of penicillilans she did not come forward to the authorities about the study (Bernal, 2013).
Ethics: Past and Present
When the Tuskegee spyhilis study was created, respect for “human dignity” was not part of the equation (Polit & Beck, 2018, p. 80). The Public Health Service, PHS, did not see fit for the men who were participating in the study to fully understand the nature of the study and what it would mean for them in the future. They were decived, and therfore did not give their informed consent to all the tests that were being done to them. When the medical staff told them the reason for all the tests was because of “bad blood”, its vagueness gave freedom to the medical team, and hindered the human subjects. Alan Brandt, a medical historian, goes on to say, “For the greater part of the 20th century we assumed that what physicians and scientists were doing was morally responsible and conscientious and we didn’t really ask about it” (Deadly Deception, 1993). The men and their families did not think to even question the doctors on their doings to them, allowing the doctors even more freedom to do as they please. The doctors justified their views by stating, “The idea, well the damage had been done, there’s not much that could be done for the men at this point, telling them would only upset them, is a very powerful example” (Deadly Deception, 1993).
After the Universal Declaration of Human Rights and The Belmont Report were released, strict ruling was implemented when conducting human research. Researchers were no longer allowed to not inform their subjects on the topic they will be contributing to, or tests that will be involved. “Transparency, openness, and reproducibility are readily recognized as vital features of science” (Nosek, et al., 2015). This was made possible only after the fact that the scientific world realized that human subjects have the right to only things that pertain to them no matter had negative it might make them look. “healthcare providers must ensure that the principles described in the Belmont Report are upheld and that patients are truly informed when signing a consent form” (Hammer, Eckardt, & Barton-Burke, 2016). It appears as if the research world has more restrictions on what they can and cannot do to their human subjects, however, it is important to protect both parties. Having universal treaties and certain guidelines makes it clear and prevents ethical issues from being torte.
Conclusion
The Tuskegee study, although a valued study at large, its basic principles disregarded the moral and basic ethics of a person at its core. It contributed to writing policies on what is and is not allowed when conducting a study on human subjects. The study’s open secret, testing only black men, puts the study in a more negative light. Withholding key components in the study, so that the PHS can continue to study the men, is unethical but focusing only on black men because of “bad blood”, makes the study racist and unethical (Deadly Deception, 1993). The findings from the exploration conclusion did not justify the means. After treatment for early stage syphilis was created, the study should have been dismembered and absolved, and the participants should have been told the truth of what the study was truly about.
