The Tuskegee Syphilis Experiment was an infamous clinical study that began in 1932, conducted by the Public Health Service at the Tuskegee Institute. July 29, 1972, it was revealed to the world and it came to an end. Peter Buxton, US Public Health Service worker had filed several reports about this unethical research. He blew the whistle on Tuskegee Project by leaking it to media.
The study is now famous and infamous because it changed the course of history and created regulations in science and biomedical research that had not formally existed before. July 29, 1972, is an important day in Black History, as well as science and bioethics history.
At the time that the experiment was proposed and initiated, it was important and timely. It would follow a group of individuals who had a common disease, which took great medical tolls on individuals and communities. The report could provide very useful information about venereal disease dynamics (sexually transmitted infections) as well as community-specific factors that could be of use to public health officers. Until 1940s there wasn’t an effective treatment for syphilis and it was considered incurable.
So, why were these men followed and left untreated for another 30 years after an effective treatment had been found? Because a team of researchers wanted to study the long term effects of the disease. That meant letting it run its course. If you buy the narrative presented in the HBO movie Miss Evers Boys, the objective rationale of initiating the study in the first place was to empirically demonstrate that Black people suffered the same from syphilis as white subjects.
This is a perfect example of how we, as scientists, can become blinded by our own ambitions to pursue an answer, complete an experiment and be tempted to ignore every ethical and moral principle in order to get that data point. I am imagining how researchers are trained to detached from their subject, in this case the researcher does whatever mental exercise needed that would allow his human subjects to suffer from Syphilis complications despite the availability of an effective and affordable cure because that subject is no longer his own individual. He is now a datum in a long, continuous a priori study that required the subject to ride this thing out.
However, as scientists we must not lose our own humanity in the dogged pursuit of knowledge. And how and why was that even allowed in the first place? Because in truth, there were many, many members of society who were not recognized as fully human. (Thanks Eugenics). Black people were one such group. At the time, a long-term comprehensive study of the disease impacts on African-Americans (then Negros) was considered a novel research question and the long-term nature of the study made meant it set a precedent in the medical science literature.
UNTREATED SYPHILIS IN THE MALE NEGROS COMPARATIVE STUDY OF TREATED AND UNTREATED CASES
R. A. VONDERLEHR, M.D.; TALIAFERRO CLARK, M.D.; O. C. WENGER, M.D.; J. R. HELLER Jr., M.D.
September 12, 1936, Vol 107, No. 11
JAMA. 1936;107(11):856-860. doi:10.1001/jama.1936.0277037002000
Perhaps the Tuskegee Syphilis Experiment did begin as a fundamental study to test the hypothesis that Black people were human, too. However, in the process the study robbed these men and their families of their humanity. The scientific understanding of who is human, what makes us human, the examination of biological differences among individual ethnic populations, especially Black and Indigenous groups, and the need to evaluate biological, medical and perhaps genetic differences in risk of diseases as well as treatment/prevention is evolving. There is a strong painful history of denying the existence of HUMANITY to persons of color, even when it comes to our need for health and medical care.
Ruha Benjamin, Ph.D. is an interdisciplinary scholar who examines the relationship between science, technology, medicine, and society. She is a professor of African American studies at Princeton University and is the author of People’s Science: Bodies and Rights on the Stem Cell Frontier.
Alfiee M. Breland-Noble, Ph.D. is Director of The AAKOMA (African American Knowledge Optimized for Mindfully-Healthy Adolescents) Project and Associate Professor of Psychiatry at the Georgetown University Medical Center.
The discussion is hosted by @TheDarkSci will explore reflections of the event and bioethics. 42 years later are African-American still afraid of being exploited by science?
Monday, July 28, 2014 at 1:00pm EST
#NSTNSchat and #Bioethics
Follow Dr. Ruha Benjamin on Twitter: @ruha9 and @peoples_science
Follow Dr. Breland-Noble on Twitter: @dralfiee
UPDATE: A summary of the engaging discussion is provided by The National Science & Technology News Service.