In 1932 an experiment was developed in the community of Macon, Alabama that lasted until 1972, in which 399 black men infected with syphilis were studied to analyze the complications of syphilis. This study was conducted by several doctors and was characterized for being approved by the Public Health Service of the United States. However, this study did not have the necessary requirements to maintain the welfare of the subjects studied. In 1972 the study came to public light but it had to be stopped due to criticism for human rights violations. In 1997 the former president of the United States Bill Clinton publicly apologized for what happened in Tuskegee. Below are the ethical problems caused by this experiment.
How do you relate the principles of respect for persons, beneficence and justice to the Tuskegee Syphilis Study?
These ethical principles are contained in the Belmont report created in 1978. This report is based on the work of the National Commission for the Protection of Human Subjects before the Biomedical and Behavioral Research (1974-1978). This report was made following several violations and damages to patients subjected to experiments like what happened in Tuskegee between 1932 and 1972.
Beneficence, consists in the right of patients to be free from any physical, social, emotional harm during the study. In the case of Tuskegee, this principle was not carried out by doctors. In the study, these 399 African Americans had been diagnosed with syphilis, but they didn’t receive treatment to treat the disease anytime. The study did not seek to treat or cure the patient. The aim of the study was to observe and analyze the consequences of long-term syphilis. Therefore, the study did not take into account patient’s suffering. Patients suffered physical, social, emotional and economic damage. The physical damage was reflected directly on their bodies, with the complications of the same disease. Emotional damage was caused by seeing their friends and relatives dying from the same disease they were suffering, social damage occurred when they were rejected by the rest because of the disease and; economic damage resulted due to the patients’ inability to work like normal people.
The principle of respect for humanity was not respected in this study either. The 399 men were victims of manipulations and lies so they accepted being subjects of this study. In documents found during this study it was shown that the nurse and the doctor in charge coerced the enrollment and the acceptance of these African Americans to be part of the study. They informed patients that this was the only way they could be treated for the disease they had due to “bad blood”. Patients were not informed clearly about the disease they had. Were not informed of the purpose of the study as well as the risks and complications that entailed the study. Therefore, doctors never honored the principle of respect.
Likewise, the principle of justice is based on the patient’s right to fair treatment. Was not fulfilled either in the Tuskegee study. Patients were deprived of receiving fair treatment. Upon the arrival of penicillin to the United States in the forties, researchers at the studio Tuskegee did not administer this drug to patients. They were administering aspirin tablets instead, knowing that this drug did not help with the eradication of syphilis.
How do you relate elements of the Nuremberg Code of 1947 to the Tuskegee Syphilis Study?
The Code of Medical Ethics Nuremberg contains a number of principles governing human experimentation, which resulted from the deliberations of the Nuremberg Trials at the end of World War II. This code was developed by the Allies in Europe definer and avoid what happened in the Nazi camps with medical experiments. This code was developed at the time the experiment took place in Tuskegee.
This code described that participation in a study or experiment must be voluntary. This is essential before starting the study. Tuskegee participants in the study agreed to “voluntarily” but were coerced because of fear that was the only chance to be treated for the disease they had, it was the only option.
The Tuskegee study was an experiment that did not bring direct benefits to society, whether to medicine, because thanks to this study more clearly described the complications of syphilis. Although if produced benefits to medical knowledge, the study caused more harm than good to the participants.
Another element in the Nuremberg Code is to avoid unnecessary damage. No experiment should be conducted if there is suspicion that the death and some irreversible damage will occur during the course of this, so which risks should not exceed the benefits. In the Tuskegee study, these codes were not met, the persons responsible for conducting this study knew the risk of the experiment and not reported it to the participants. They preferred not to say anything just to move forward in the investigation. For Tuskegee, risks exceeded benefits, many patients died, and many other developed an advanced stage of disease with chronic suffering thereof.
Why the case was considered a violation of human rights of this vulnerable group of subjects?
This study is considered as a serious violation of human rights for many reasons, in this study the main universals rights are not respected.
The main affected right was the right to health. In this study they were denied the right to fair treatment, which led to these participants develop complications that have led to suffering and death of most of the participants.
The right to humane treatment was not respected either. Patients were victims of senseless procedures, had no specific purpose, such as lumbar punctures, which were painful for patients and had no health benefit on them.
In turn you can say they chose this group of African Americans because they were people who in the 1930s were seen as an inferior society, and therefore the doctors who conducted this study preferred to choose a forgotten group, which could presenter manipulate easily without resistance. The same happened in Nazi Germany, which conducted medical experiments on Jewish and homosexuals, whom they considered inferior.
Offer your comments about the NURSE and her role in this ordeal? Who is this nurse? Discuss how she dealt with the situation. Were her actions justified, ethical or not? What is your take on her actions?
The response of the nurse during the study was to always follow the doctor’s orders. During the interrogation that was performed to the nurse after the end of the study, She justified herself saying that his duty was to fulfill the doctor’s orders. In my opinion, the nurse acted in a negligent and wrong way, although following doctor’s orders. As a nurse, their mission should have been the benefit for the patients comply with the basic principles of human rights. Everyone has the right to be healthy. But she would not guarantee the universal right to patients, however, she allowed for years that these patients got worse. At that time, there was not much independence in the nursing career. Nurses depended on the doctor. But still, the action of the nurse had been focused on ensuring the benefit of the patient before the doctor’s orders meet.
The nurse Eunice Rivers was the nurse who helped physicians in the Tuskegee study, she was the only person who was throughout the study process from the beginning to the end. She was African-American, she worked at the John Andrew Hospital, and was known for helping low-income patients to receive free treatment. Most patients were African American like her, who were recruit without knowing the truth.
The actions taken by the nurse are not justified. Nothing is justifiable if it causes harm to people. In the decade of the 30’s when the study began, there were not codes and standards that exist today. But even so, there being no code of ethics, she should have respected the right of not to harm the patient, but the damage was not inflicted directly, this was produced indirectly by not providing adequate treatment on time. If I had lived at that time, and had had the role that had the nurse, not having a code of ethics to follow, I would have lean to our patients, not to harm them. With that simple thought, I would have avoided the harm caused to patients. Perhaps the study had run its course without her, but she had not been part of the experiment. His duty would have been at least to inform patients of the risks facing when entering the study.
Discuss the implications of the case from that era compared to the present time using the ethical principles especially the elements of the informed consent and the Nuremberg Code.
Nowadays, there are ethical codes and standards, due to what had happened in the past. In the 30’s, when the Tuskegee study began, there was no code to follow to protect patients. There was no regulation on what should and should not do. Everything depended on the way of thinking from who was leading the experiments. Mistakes made in the past have helped us not to repeat history. The revelation of what happened in Tuskegee helped us review what is needed to be change and how to proceed in studies and experiments with humans.
What happened in Germany with the Nazi experiments ultimately led to the adoption of the Nuremberg code. This code marks a before and after on the rights of persons entering as an object of study and research. The Tuskegee case taught us that the life of the people must be respected despite coming from different social classes, although not belong to the same socioeconomic status, people must be respected and thus ensure their welfare. Following the adoption of the Nuremberg Code a process was started to ensure the welfare of subjects enrolled in research studies. Declaration of Helsinki was approved, which promotes the fundamental principle of respect for the individual.
In the Tuskegee study, the principles adopted at the Nuremberg Code were not put into practice. The main principle to inform the patient and seek informed was not done as it should consent. Despite requesting an “authorization” to patients in Tuskegee, this consent was not informed. Patients were not informed that this study had risks for their lives. Now is different. Informed consent is one of the fundamental principles for a study. Today, every country, every profession has a code of ethics that ensures the protection of patients who participates in studies and experiments. Currently, the patient is informed of the nature of the study, its objectives and consequences, as well as the potential risks thereof.
The principles of the Nuremberg Code are implemented today. These studies are conducted on the basis of previous results in animals, avoiding unnecessary physical and psychological risks to people. The risks of current studies do not exceed the benefits sought in the study. At the same time, patients are free to stop their participation in the study or experiment at any stage thereof without retaliation.
Conclusion.
There’s no doubt that the impact produced by the Tuskegee study was big and notable. It was a study that harmed the health of many patients, who mostly ended up dead because they did not receive proper treatment in time. This study modified how to do medical research in the United States and the world. Despite the negative impact of it, this taught us not to repeat the same mistakes. This study (Tuskegee) should not be forgotten, because it reminds us what can happen when science is placed above basic human rights.
Following the public discovery of this study, research changed. Several codes were created, such the Declaration of Helsinki, Belmont report, and most recently in our history, the acting nursing act(USA).
The Acting Nursing Act is intended to prevent harm to the patient. As nurse, we must be able to defend at all costs the patient’s welfare, even against doctor’s orders. We should be able to put ourselves in the place of the patient and know how to defend he/she from any unnecessary damage, always putting welfare and patient safety first. This objective must be passed down from generation to generation, so that all people who do research take into account the basics regarding the protection of participants.
History can not be forgotten, who forgets history is doomed to repeat it.
References.
Center for disease control and prevention . (2015, December). The Tuskegee timeline.
Retrieved from http://www.cdc.gov/tuskegee/timeline.htm.
Tuskegee University. (n.d.). About the USPHS Syphilis Study. Retrieved from
http://www.tuskegee.edu/about_us/centers_of_excellence/bioethics_center/about_the_usphs_syphilis_study.aspx.
University of Virginia. Historical Collections at the Claude Moore Health Sciences Library.
(1996, May). Final Report of the Tuskegee Syphilis Study Legacy Committee. Retrieve from http://exhibits.hsl.virginia.edu/badblood/report/.
The Nuremberg Code (1947) In: Mitscherlich A, Mielke F. Doctors of infamy: the story of the
Nazi medical crimes. New York: Schuman, 1949: xxiii-xxv.
Office for Human Research Protections. (n.d.).The Belmont Report. Retrieved from
http://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/.