To be frank, the human race does not have the best track record related to ethical medical research. Nazi Germany and the German medical community were very complicit in conducting inhumane, cruel and unethical human research during World War II. After World War II, the Nuremberg trials were shepherded to hold those responsible for some of the heinous acts of “research” conducted in concentration camps (Vaughn, 2017). The outcome of these trials came to be called The Nuremberg Code, which are ten points that outline what is deemed permissible medical experimentation (Vaughn, 2017).
The Children of Willowbrook, was another situation that began in Staten Island, NY in the 1950s when a children’s state school for the mentally disabled was purposely infecting patients with Hepatitis (Vaughn, 2017). The facility was overcrowded, understaffed, and patients were living in inhumane conditions. This facility did not close until the 80s.
Then there was the Tuskegee Syphilis study that took place in Alabama from the early 1900s all the way to 1972. Basically, a small group of black men were used to study the long-term effects of Syphilis on the human body. This was done without informed consent and continued on even after penicillin was discovered and a by 1947 was a well-known cure for Syphilis (CDC, 2020). These men were not offered treatment, and the study did not end until 1972 when a journalist took wind of the situation and created public outcry (CDC, 2020). The Tuskegee Syphilis Study led to the Belmont Report and the National Research Act of 1974. The Belmont Report provides an ethical framework to conduct research stemming from the principals of respects, beneficence, and justice (Vaughn, 2017). Respect, referring to autonomy of the patient and informed consent, and the right to confidentiality. Beneficence and nonmaleficence, meaning “doing good” and avoiding doing harm. And lastly justice, meaning that research must be conducted fairly, in a non-exploitative manner, and there must be a fair distribution of cost to both individual and community.
Why we now have codes of conduct, laws, and oaths to guide us in ethical practice related to human research, and care of patients, one must not forget that ethical practice is one that must constantly be reexamined, adapted and enforced. As an Advanced Practice RN (APRN), it is of up most importance to advocate for the patients, their autonomy and their rights. The APRN can play a major role in developing research design, frameworks and implementations so there is a duty to do so in an ethical manner. So when developing EBPs, it is important do rigorous research and closely follow the EBP process.
References
Center for Disease Control and Prevention [CDC]. (2020). U.S. public health services syphilis study at Tuskegee: The Tuskegee timeline. https://www.cdc.gov/tuskegee/timeline.htm
Vaughn, L. (2017). Bioethics: Principles, issues, and cases (3rd). Oxford University Press.
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