We’ve come a very long way in the way we perceive medicine and how we use it. We’ve grown from studying the humors of medieval times and performing brain lobotomies in the 1900s to the most complex surgeries and medicines that can save millions of lives. But sometimes the question that isn’t asked is, what was the cost of this new knowledge? Were the decades of long, painstaking research and repeated experiments worth it when some subjects were put through experiments that ended in permanent injury or their death? There has always been a long and dark history to the cases of medical bases, especially in the case of race, sex, and gender. In this article, I want to focus on racial bias, discussing the story of the Tuskegee Syphilis Experiment, why it is an example of medical bias and the impact that this bias made on history and future research.
What Started This?
In 1932, a study was started by the Public Health Service to study the natural history of syphilis to justify treatment programs for black males. The experiment was meant to build upon a similar study on untreated syphilis in Norway in 1928. The initial goal of the study was to follow the disease in black men for six to nine months, and have a treatment phase for the subjects after. The study took place at the Tuskegee Institute in Alabama and the subjects were recruited from Macon County, which is part of the Black Belt, a region with rich soil and black sharecroppers. The participants were mostly poor and illiterate, signing up mainly for the benefits described to them. About 600 participants were recruited, 399 who had untreated syphilis and 201 who acted as control subjects.
What Went Wrong?
The problem with this study that caused so much controversy was what the research participants were told about the study and what would happen to them. The participants were told that they were being treated for bad blood, which was used to describe issues like fatigue, anemia, and syphilis. They were told that they would receive medical exams, rides to and from the clinics, meals on examination days, free treatment for minor ailments and guarantees that provisions would be made after their deaths in terms of burial stipends paid to their survivors. The participants were told that the study would last for six months in 1932, but it went on until 1972. Another problem with the ethics of the study was the fact that the participants gave no written or informed consent to be experimented on. There was no evidence to show they had an option to leave the study, and the treatment they were given was slightly effective and highly toxic. After years of research and generations of unknown diseases transferred to spouses, children, and many affected, a report by the Associated Press was released in 1972 about the experiment, which was then forced to shut down a month after. Even though a class-action lawsuit led to nine million dollars given to the participants and an apology was given by President Clinton, the consequences brought to the participants and their families couldn’t be undone. The last survivor of the experiment passed away in 2004, and the last widow receiving benefits from the Tuskegee Health Benefit Program passed away in 2009.
How Has It Affected Research & Medicine Today?
Despite the heartbreaking story of the Tuskegee Syphilis Study, it has helped to change how researchers approach studies similar to it. The study led to the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act, as well as the establishment of institutional review boards, or IRBs for institutions receiving federal support. Since the end of the study, IRBs require that all participants in a study are willing and voluntary patients. In the end, because of the syphilis study, the U.S. was able to become a more ethical place for research, even creating the Tuskegee Bioethics Center, a national center for research and health care.
About the USPHS Syphilis Study. (n.d.). Retrieved October 25, 2019, from https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study.
Brown, D. N. L. (2019, August 26). ‘You’ve got bad blood’: The horror of the Tuskegee syphilis experiment. Retrieved October 25, 2019, from https://www.washingtonpost.com/news/retropolis/wp/2017/05/16/youve-got-bad-blood-the-horror-of-the-tuskegee-syphilis-experiment/.
CDC. (2015, December 22). Tuskegee Study – Timeline – CDC – NCHHSTP. Retrieved October 25, 2019, from https://www.cdc.gov/tuskegee/timeline.htm.
Heller, J., Burns, L., Merritt, C., Corine, Thompson, M., Sam, … Bryant, D. (2018, April 13). Generations later, the effects of the Tuskegee syphilis study linger. Retrieved October 25, 2019, from https://www.statnews.com/2017/05/10/tuskegee-syphilis-study/.
Jones, J. H. (1993). Bad blood: The Tuskegee Syphilis Experiment. New York: Free Press.