Responses
Staci Discussion:
In 1932, Public Health Services and the Tuskegee Institute started collaborating to research the syphilis' natural history. The program was titled "Tuskegee Study of Untreated Syphilis in the Negro Male" and would use people, mainly African America guys. Six hundred black men were included in the study's sample, of whom 399 had syphilis diagnoses and 201 did not. These men would receive free medical checkups, meals, and funeral insurance in return for their involvement (2015). Unfortunately, these males were not informed of the study's genuine purpose. All participants did not provide informed consent, were told they were being treated for "bad blood," and several did not even obtain the appropriate care for the illness even though there were available treatments. The study lasted for about 40 years; in the 1970s, it became apparent that these men did not fully understand the terms of the study, and lawsuits to compensate the families affected got underway. Regrettably, it was not until 1999 that the United States issued an apology for its role in the researcher (2015).
It is reasonable to state, in my opinion, that researchers should have properly revealed the study's goal, both for ethical and legal reasons. I'm going to assume that this is due to the worry that people wouldn't participate if their genuine motives were known, but this is the case in many studies. Vicki Freimuth and her colleagues discovered after examining the Tuskegee Investigation and conducting their own study that people are only willing to take part in invasive research if there won't be any negative side effects (2001). Despite the fact that I concur with Freimuth and her research team, I also believe that the time frame in which this all started needs to be taken into account. Free meals, medical checkups, and funeral insurance were huge deals in 1932, but even if participants had been aware that they were doing so, the sample size would still have been smaller. The men who took part in the study should have been informed of its purpose and given the freedom to choose if the advantages exceeded the hazards.
CDC. (2015). The tuskegee timeline. Center for Disease Control and Prevention. http://www.cdc.gov/tuskegee/timeline.htm
Freimuth, V.S., Crouse Quinn, S., Thomas, S.B., Cole, G., Zook, E., & Duncan, T. (2001). African Americans' view on research and the tuskegee study. Social Science & Medicine, (52)5, p. 797-808. doi:10.1016/S0277-9536(00)00178-7.
In 1932, researchers conducted one of the most unethical studies in U.S. history commonly referred to as the Tuskegee experiments. “The study was intended to observe the natural history of untreated syphilis” in black males (CDC, 2021). Under false pretenses, researchers enrolled 399 poor black sharecroppers from Macon County in Tuskegee, Alabama. Researchers lied to these participants and told them they were being treated for “bad blood” and not syphilis. When the study first began, treatment for syphilis was not available but a few years later, penicillin became the drug of choice to manage these infections. Researchers purposely withheld this information and did not notify participants of these developments. Afterall, their goal was to observe the effects of “untreated syphilis.” If researchers would’ve been honest about their intentions then participants would’ve reacted negatively. Full disclosure about the research methods prior to the start of the study would’ve made it difficult for researchers to find black males willing to sacrifice their health. The Tuskegee experiments casted a shadow over biomedical research and is believed to be one of the underlying causes of medical mistrust among African Americans. “From a historical perspective, the Tuskegee syphilis study is widely recognized as a reason for mistrust because of the extent and duration of deception and mistreatment and the study’s impact on human subject review and approval” (Scharff & et. al., 2010).
References
Centers for Disease Control and Prevention. (2021, April 22). Tuskegee Study and Health Benefit Program - CDC - NCHHSTP. Centers for Disease Control and Prevention. Retrieved July 26, 2022, from https://www.cdc.gov/tuskegee/index.html
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