Ugly History: The U.S. Syphilis Experiment - Susan M. Reverby
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For centuries, scientists and doctors have searched for differences between people of color and whites that extend beyond skin tone. They have assumed that these differences are beneath the skin, pass from one generation to another, and affect everything: intelligence, athletic ability, illnesses, and even likelihood of death. While we know, of course, that there is human variation in differing peoples (some taller, some skinnier, some with bigger noses, some not), there are great differences in individuals within groups we have labeled “race,” and more similarities than differences between us. But belief in these differences as inherent in our genes and not changeable contributes to the racism that supports the inequality of social and political institutions, even in science and medicine.
Indeed assumptions about the differences have even made into the measurements within the machinery we use to look for illness, and give false differences. So when scientists or doctors expect to see difference because of racial categories, they find them and often make mistaken diagnoses or treatments. In the case of syphilis, for example, scientists often ignored evidence that contradicted their assumptions of difference, even as many Black doctors tried to show such evidence was incorrect.
Do doctors need permission to put you in a study?
Before the 1970s, it was assumed primarily that doctors would follow the Hippocratic oath they all take and promise “to do no harm.” Yet in doing medical research, now called clinical trials and before often called medical experimentation, it was just assumed that the doctor would do the right thing. Yet in research, as opposed to in individual patient care, doctors were often focused on their science not their participants. After the revelation of the study in Tuskegee, as well as several other research studies in which participants were not told what was happening or asked for permission, there was a re-evaluation of the ethics of clinical research. As a result, we now have institutional review boards that oversee proposed research protocols and requirements that appropriate informed consent be obtained. It does not, however, always work.
Does the history of this study in Tuskegee matter now?
When the COVID pandemic hit in the United States, it became obvious quickly that Black, Brown and indigenous people were getting sicker and dying sooner. Most accounts made it clear there was nothing about genetics that made this happen. Rather it was the consequences of structural racism that led to overcrowding in housing, lack of jobs that could be done from home, multi-generational households, fewer better-run nursing homes, and the stress of racism that led to greater vulnerability to the virus. Yet when many people of color, especially African Americans, were queried about whether or not they would take the new vaccines, there was hesitancy, and time after time knowledge of the study in Tuskegee was cited as the reason.
Yet the study in Tuskegee ended nearly fifty years ago, and most people, including African Americans, actually don’t know much about it. Rather if they cite it at all, it is really to say something about everyday racism. In that case, it is worth considering why knowledge of the study matters, even as the real issues are about structural racism now.
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