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47 DttP 11 (2019)
Tuskegee Syphilis Study of 1932 - 1973 and the Rise of Bioethics as Shown through Government Documents and Actions

handle is hein.journals/dttp47 and id is 84 raw text is: FEATURE Tuskegee Syphilis Study of 1932- 1973 and the Rise of Bioethics as Shown Through Government Documents and Actions Laura A. Barrett One government source regarding clinical trials is Clini- caltrials.gov (https://clinicaltrials.gov), which is available to health information seekers as a resource to find information about past, current, and recruiting clinical trials. Currently, if you participate in a clinical trial you are required to provide your informed consent. This means you have been informed of the risks, benefits, purpose of the study, and your rights. This information is provided to you so that you, as the poten- tial participant, can make an informed decision before deciding whether or not to participate. If you work with or in research, you will become very familiar with the term IRB, which stands for Institutional Review Board. An IRB is a panel intended to oversee the entire scope of one or more medical research studies including protecting the rights and welfare of human research subjects. Although it may seem like common sense that these two things are necessary, there was a time when they did not exist. A new approach to bioethics and the regulation of clini- cal trials and medical studies using living human subjects came about from public and governmental outrage over one study, known as the Tuskegee Syphilis Study. By looking specifically at this case, which led to the rise of bioethics at the federal- government level in the 1970s, the origin of IRBs and informed consent as they relate to medical studies and human subjects will be illuminated. The issues of IRBs, informed consent, and bioethics are important in the library and information science community because we often interact with a public that is impacted by the policies and regulations related to these issues. In addition, we are the very researchers, or hold relationships with researchers, that are held to the strict standards set in place by IRBs and bioethics in general. Syphilis Let's go back to the 1920s. Syphilis had an incidence rate higher than that of gonorrhea, typhoid, diphtheria, or pertussis.1 It was not as deadly as some other diseases but did cause damage- some permanent-or death.2 Syphilis is a sexually transmitted disease (STD) caused by a bacterium but can also be transmit- ted from a pregnant woman to her unborn child. Symptoms of syphilis are not always apparent even now, and they were less so in the 1920s, when it was often referred to as bad blood, especially in the African American commu- nity. Symptoms can look like other illnesses, but syphilis usu- ally follows stages that can last for weeks, months, or years. Syphilis can be transmitted during stage one, stage two, or the early latent stage of the disease. In addition, even if you receive treatment once, you are still at risk of being reinfected if you come into contact with the bacterium that causes syphilis again. Syphilis is a disease with an acute span of about 2 years and with chronicity which may persist throughout the life span. Most of its lethal and crippling manifestations occur during the first 15 to 20 years of the chronic period.3 Choosing Macon County and the Start of the Tuskegee Study Syphilis in Macon County, Alabama, was chosen as a study topic for the following reason, In the late 20's various of the foundations began their studies of health conditions in the south which were to eventuate in the development of local health units. One of the most striking findings in the early surveys DttP: Documents to the People Winter 2019 1 1

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