The Tuskegee Institute, with financial backing through the Julius Rosenwald Fund and the U.S. Public Health Service, attempted to research the effects of penicillin on African-American subjects infected with syphilis. Although it seemed that the project began with good intentions (improving the quality of life for African Americans in the south), once the Great Depression hit, financial difficulties led to the study being scrapped. With extremely reduced funding, scientists suggested that they proceed with the study, except without any means of treating the subjects. Essentially, the scientists wanted to see if race had any effect on how syphilis affected (destroyed) the human body.
The main methodology used to gather subjects was through the Tuskegee Institute. Known for being a black establishment which obviously sought to advance African-Americans in society, the Tuskegee Institute promised burial insurance, food, medical examinations, and more to volunteers. Naturally, a lot of people signed up due to their lack of pretty much all of the above. The scientists began by simply observing how syphilis affected around 400 test subjects, then switched to applying methods that were only mildly effective. The scientists had a clear understanding that these methods would not cure the subjects, but wanted to see how their bodies would react anyway. After the research, subjects continued to be studied through the use of spinal taps and the threat of losing their burial insurance.
Researchers quickly discovered that penicillin actually does help fight syphilis and could very easily save the lives of many of the test subjects. So naturally, they decided to give their subjects a healthy dose of life-saving penicillin, right?
Of course not! In order to continue to study the effects of syphilis on African-Americans, they denied their subjects the appropriate treatment methods. On top of that, the scientists would not even allow other sources to administer treatment. The subjects were essentially married to the study ’til death do them part. Ethical problems with this study are painfully obvious: the requiring of a life-long commitment, absolutely no treatment for the disease being studied, and preventing the subjects from knowing what disease was afflicting them. There is (hopefully) no way scientists could get away with something like this today; after the Tuskegee Syphilis Study was brought to light in 1972, the United States was forced to completely rework its Health, Education, and Welfare regulations when dealing with human test subjects. In order to perform a study such as this while still respecting basic ethical principles, the scientists should have clearly explained the situation and what they were looking to test to the subjects before the experimentation. Additionally, once the subjects were properly diagnosed, the scientists should have asked them whether they would like to continue with the study, clearly stating that proper treatments would be applied to cure whatever disease it was that they had. Essentially, the scientists should have been honest with their subjects and put human life ahead of scientific research.
As scientists for the Worldplay Research Initiative, we too have to be careful when dealing with our subjects. Hopefully, syphilis will not be a topic of discussion for anyone involved. Nevertheless, it is important to realize that we are dealing with other human beings and not simply an avatar or a bunch of data waiting to be collected. We must put human life and sanity before our research. Again, I doubt life or death will really be an issue for us except when dealing with the most rabid of fanboys, but clearly defining the parameters of our study and what we hope to gather from our subjects is important to establishing trust and security. The last lesson to be learned is to avoid life-long commitments with our subjects, no matter how nice they might be, because we don’t want to get hit with any virtual restraining orders.