Tuskegee Syphilis Study Ethical Issues Essay

From the 1930s to 1972, the United States Public Health Services carried out a study on the natural history of untreated syphilis in Tuskegee, Alabama (LaMorte, 2016). About 399 men with syphilis and 201 men without syphilis were recruited for the study without letting them know the real purpose of recruiting. All of the men involved in the research were African-American. They were incorrectly informed that they would receive special free treatment. All of the men who were part of the project received free medical examinations, meals, and burial insurance. By 1936, it got clear that problems were common in the infected men and after a few years, the death rate of men with syphilis was twice as high (LaMorte, 2016). Even though penicillin was known to be an effective treatment for syphilis, it was not given to subjects and they were also not told about the availability of the treatment.

The study ended after being revealed by the New York Times in 1972. In 1974, the National Research Act was signed and a Health and Human Services Policy for Protection of Human Research Subjects was also established (LaMorte, 2016). As a result, all US research that has any involvement of human subjects is now required to be reviewed and approved by an Institutional Review Board (IRB). To participate in a research trial, subjects have to voluntarily give their informed consent which means that the subjects have to be informed and understand all aspects of the research including the nature and objectives of the study, the risks, and benefits, the treatment options, the data to be collected, the methods of the treatment, etc (LaMorte, 2016). It has to be signed before the treatment starts.

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The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research has also been established, which identifies the fundamental ethical principles to be adhered to in research involving human subjects. In 1978, the Belmont report was commissioned by the US Government in response to ethical failures in medical research, such as the Tuskegee Syphilis Study, by a panel of experts. The Belmont Report, also known as 'Ethical Principles and Guidelines for the Protection of Human Subjects of Research,' identified three fundamental ethical principles for all human subjects research including respect for persons, beneficence, and justice.

Respect for persons includes two ethical convictions. First, individuals should be treated as self-determining agents, and second, persons with diminished self-determination are entitled to protection. The principle of respect for persons, therefore, divides into two separate moral requirements. One of them is the requirement to recognize self-determination and the other one is the requirement to protect those with diminished self-determination.

The principle of beneficence is to treat the person in an ethical manner by not only respecting their decisions and protecting them from harm but also making efforts to secure their comfort. Beneficence is an ethical principle that addresses the idea that a nurse should do what is best for the patient. The two general rules of beneficent actions are do not harm, maximize achievable benefits and minimize possible harms.

The principle of justice is to treat everyone equally. An injustice occurs when someone is entitled to a benefit and is denied without good reason or when someone is forced with something. It is very important to explain in what respects people should be treated equally. There are many ways to distribute burdens and benefits. As a nurse, responsibilities should be shared equally, each person should be treated according to their need, and care should be fairly, justly, and equitably distributed. In the 1940s, the Tuskegee Syphilis Study took advantage of rural black men to study the untreated course of a disease that is limited to that population. They did not provide effective treatment in order not to interrupt the project even after knowing that treatment for the disease was available. Whenever publicly funded research leads to the development of therapeutic devices and procedures, justice demands that the research provide benefits to those who can afford them and that such research should not involve people from groups that are unlikely to be among the beneficiaries of subsequent research applications.

The Belmont Report was similar to the Nuremberg Code which was introduced in August 1947, after the Nuremberg trials. In these trials, Nazi doctors were convicted of crimes committed during human experiments on prisoners in concentration camps. It tried to give clear rules on what was legal and what was not legal when conducting human experiments. The code consists of ten points. The first and most important thing is that anyone who participates in an experiment must give informed consent. This means that nobody can be forced to take part in human experiments and all participants should understand the potential risks. The code also provides rules for conducting experiments such as participants being able to leave the experiment if they want. Doctors must stop the experiment if they know that it can harm the patient. There can also be no experiment where the risks are more important than the benefits that can be derived from them.

Similarly, the Universal Declaration of Human Rights (UDHR) was also introduced in 1948 to protect human rights. The declaration consists of 30 articles, from which many of which were violated by the Tuskegee Syphilis Study. The treatment was not done based on equality. All patients who were getting studied were African American men living in poverty. The patients were tortured by not giving them the right treatment and not letting them use any other facilities. They were not informed of what was going on with them. The study did not consider the harm caused to individuals and their families.

Though the study was organized and managed from Washington, the participants dealt with a black nurse named Eunice Rivers, who helped with transportation to the clinic, free meals, and even burials. She was the experiment’s only consistent member. The doctors who were involved in the study changed regularly. She was well aware of the lack of treatment being offered but felt her role was to console the involved men, many of whom were her direct friends. She had no knowledge that no treatment was completely unethical. She thought her job is to only take care of patients regardless of their treatment. Patients were not getting treated even though treatment was available and everyone knew about it. She was able to allow the study to continue without speaking out for 40 years which I believe she should have done at the beginning so patients didn't have to suffer without treatment.

Today, a rigorous protocol is in place for human experimentation. It is now generally accepted that for a research study involving human experimentation to be morally sound, it must include the disclosure of all relevant information and must make human life the most important. The study must be fully understood by the participant to make a sound judgment as to whether or not they wish to participate. Human subjects in research studies have the right to ensure their autonomy, including informed consent, and the right at any time and for any reason to leave a study. Every new study must also be reviewed and approved by an Institutional Review Board, which examines the protocols of the study and determines whether its ethical standards are consistent.

I think the Tuskegee Study on many levels was morally and ethically wrong. It put scientific findings ahead of human life and rejected treatment of those who needed it without proper consent. As a result, it eventually caused death or serious physical damage to a large number of men. Although there were no outlines guiding ethical procedures for human experimentation at the beginning of the study, most people know that lying is wrong when they are very young. The doctors and scientists conducting the study should never have used lies to force syphilitics to take part in their study. Even if the doctors did not believe that using lies to involve patients in the study was wrong, the study should have been terminated immediately after the issue of informed consent was decided. There are protocols in place today that place human life above a scientific experiment. These guidelines help ensure something that will never happen again that weakens human life, such as the Tuskegee Syphilis Study.

References

1. Apology to Survivors of the Tuskegee Syphilis Experiment [Video file]. (1997, May 16). Retrieved from https://www.youtube.com/watch?v=F8Kr-0ZE1XY
2. Bad Blood: The Tuskegee Syphilis Study. (1996, May). Retrieved from http://exhibits.hsl.virginia.edu/badblood/report/
3. LaMorte, W. W. (2016, June 8). Institutional Review Boards and the Belmont Principles. Retrieved February 23, 2019, from http://sphweb.bumc.bu.edu/otlt/MPH-Modules/EP/EP713_ResearchEthics/EP713_ResearchEthics3.html
4. Polit, D. F., & Beck, C. T. (2017). Ethics in Research. In Essentials of Nursing Research: Appraising Evidence for Nursing Practice (9th ed., pp. 77-90). Philadelphia, PA: LWW.
5. Stelzer, P., Konwiser, K., Konwiser, K., & Kavanagh, D. (1997, February 22). Miss Evers Boys [Video file]. Retrieved from https://www.youtube.com/watch?v=nHP1p9bRQ3Q
6. The Belmont Report. (1979, April 18). Retrieved February 23, 2019, from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
7. The Tuskegee Timeline. (2015, December 22). Retrieved from https://www.cdc.gov/tuskegee/timeline.htm
8. Universal Declaration of Human Rights. (1948, December 10). Retrieved from http://www.un.org/en/universal-declaration-human-rights/
9. Wilding, A. (2011, August 15). The Tuskegee Syphilis Experiment and Medical Ethics [Video file]. Retrieved from https://www.youtube.com/watch?v=9Rg75zEVB1g