In discussions
of ethical research practices, one of the most often cited instances is the Tuskegee
Syphilis Study. In 1932, a team of researchers in Alabama sought out to explore
the effects of untreated syphilis (Brandt, 1978). They recruited 600 men, 400 of
whom had syphilis, all of whom were African-American and in poverty. The men
participating in the study were furthermore not informed that they had the
disease (Fairchild & Bayer, 1999). The research continued into the 1960s, despite
the fact that treatment for syphilis became available in the form of penicillin
in 1947. The participants in the study were not provided treatment. It was not
until 1972 that the Department of Health, Education and Welfare stepped in. By
then, only 74 of the participants were still alive.
This topic becomes
vitally important when we consider what is and is not considered just in terms
of medical research. This particular study is infamous for crossing numerous
ethical lines. The men involved in the study were deceived, manipulated, taken
advantage of, and discriminated against based on their class and their race. The
researchers lured in their participants that they were receiving treatment for “bad
blood,” while they received no treatment at all, least of all for the deadly
illness they did not know they were suffering from (Fairchild & Bayer,
1999). This practice consequently limited the participants’ ability to seek proper
care. Current perspectives on this issue determine that the study violated
ethical conduct such that the researchers exploited individuals who were in
need, intentionally deprived them of treatment for the sake of the research,
and operated under a mentality that their race and social status made such
actions acceptable.
According
to Allan Brandt, the researchers targeted men of color due to a claim that
African-Americans possessed “an over-zealous sexuality” or “an excessive sexual
desire.” Today’s ethical research standards make it very clear that we as
scientists are to see participants as a human first. In other words, when
researching ethnic or racial differences, an environment of trust and respect
must be cultivated and consideration must be taken to avoid bias, stereotypes,
etc. (Rothstein, 2013). The Tuskegee Syphilis Study is in part responsible for
the creation of such standards because of the way it so clearly violated them.
Today's research is conducted with this study in mind so as to prevent anything like it from occurring again. In some cases, the scientific discoveries made in human research offer great benefits to society at large. However, the ethical implications, as well as general respect for human life, cannot be overlooked.
Today's research is conducted with this study in mind so as to prevent anything like it from occurring again. In some cases, the scientific discoveries made in human research offer great benefits to society at large. However, the ethical implications, as well as general respect for human life, cannot be overlooked.
Brandt, A. M.
(1978). Racism and Research: The Case of the Tuskegee Syphilis Study. The
Hastings Center Report, 8(6), 21. doi: 10.2307/3561468
Fairchild, A. L.,
& Bayer, R. (1999). Uses and Abuses of Tuskegee. Retrieved from https://science.sciencemag.org/content/284/5416/919
Rothstein M. A.
(2013). Ethical research and minorities. American journal of public health,
103(12), 2118. doi:10.2105/AJPH.2013.301390
To expand on one of the laws created because of this study-
ReplyDeleteA few years after this study was terminated, the National Research Act of 1974 was signed into law by congress and the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research was created (Rice, 2008). Between 1930 and 1974 several harmful and unethical experiments were conducted in America leading to a dire need for this law to be established (Breault, 2006). The Tuskegee Study was one of the experiments during this time that had large negative impacts on generations (Breault. 2006). The Willowbrook study (1956-1971) was another unethical study in which a doctor exposed children from 3 to 11 years old to a live hepatitis virus in hopes of creating a vaccine (Carroll & Gutmann, 2011). Additionally, between 1963 and 1971, 67 prisoners were exposed to radiation on their testicles to determine the effects of radiation on sperm production without being informed about the potential cancer risks associated with radiation (Arulkumaran, 2017). These experiments along with many others resulted in the Belmont Report being issued by the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research (Breault, 2006). This report stated 3 fundamental principles that were needed to conduct human research : rights to the persons, beneficence, and justice (Rice, 2008).
Arulkumaran, S. (2017). Health and Human Rights. Singapore Medical Journal, 58(1), 4–13. https://doi.org/10.11622/smedj.2017003
Breault, J. L. (2006). Protecting human research subjects: The past defines the future. The Ochsner Journal, 6(1), 15–20. https://doi.org/10.1043/1524-5012(2006)006[0015:PHRSTP]2.0.CO;2
Carroll, T. W., & Gutmann, M. P. (2011). The limits of autonomy: The Belmont Report and the history of childhood. Journal of the History of Medicine and Allied Sciences, 66(1), 82–115. https://doi.org/10.1093/jhmas/jrq021
Rice, T. W. (2008). The historical, ethical, and legal background of human-subjects research. Respiratory Care, 53(10), 1325–1329.
I think is important to frequently revisit the Tuskegee Syphilis Study along with other unethical medical research practices to remind ourselves, as scientists, that there is more than just codes and guidelines that should regulate our behavior. While codes of conduct are essential for laying the groundwork of appropriate and inappropriate practices, we must always take into consideration the moral and ethical interpretation of these rules. In an article by Charolette Paul and Barbara Brookes (2015), they explore the scientific, political, and moral rationalizations given by the defenders of the Tuskegee Syphilis Study and also the New Zealand "Unfortunate Experiment." While this two experiments happened at two different times in two different places, they are strikingly similar. The same moral claim was given for both studies: they were not guilty of violating medical research codes. Today, we better understand that ethics play a large role in medical research, but it is important to remind ourselves of the past in order to limit its repetition in poor practices and unacceptable justifications.
ReplyDeletePaul, C., & Brookes, B. (2015). The Rationalization of Unethical Research: Revisionist Accounts of the Tuskegee Syphilis Study and the New Zealand "Unfortunate Experiment". American journal of public health, 105(10), e12–e19. doi:10.2105/AJPH.2015.302720
Unfortunately, this is not the only case of maltreatment and unethical practices in the medical community, especially on Black Americans. Other examples include Henrietta Lacks and the irradiation experiments where patients with advanced stage cancer received whole-body radiation under the guise of cancer treatment, which occurred during 1960-70’s (“Cold War Radiation Experiment on Black Cancer Patients (1960-1971),” 2017). Despite the four ethical principles of autonomy, justice, beneficence, and non-maleficence that developed to prevent these unethical practices from happening again, the generational trauma created from these experiments caused health disparities within the effected communities. Because of the Tuskegee syphilis study, African American research participation is incredibly low and there has been a lot of mistrust in the medical system. This results in gaps in our knowledge with how, for example, certain medications would work in different populations (Scharff et al., 2010). To combat these, it is up to the health providing team to develop trust and communication with the patients. It is incredibly disappointing to know how dark our medical history is, but we must be reflective of our actions to create a more ethical environment.
ReplyDeleteCold War Radiation Experiment on Black Cancer Patients (1960-1971). (2017, December 9). Retrieved October 13, 2019, from Black Then website: blackthen.com/cold-war-radiation-experiment-on-black-cancer-patients-1960-1971/
Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: Understanding Mistrust about Research Participation. Journal of Health Care for the Poor and Underserved, 21(3), 879–897. https://doi.org/10.1353/hpu.0.0323