After reading about the syphilis study at Tuskegee, how do you think participants in the study would have reacted had they been given full disclosure about the research methods prior to the start of the study? When responding to your classmates, discuss possible suggestions for re-creating the study using the current standards used in research with human subjects.
Response one
8-2 Discussion: The Tuskegee Study ( one pages)
The Tuskegee Study of Untreated Syphilis in the Negro Male initiated in 1932 involved 600 black men – 399 infected with syphilis and 201 uninfected subjects who served as a control group. The men in the study were recruited with misleading promises of “special free treatment”, which were actually spinal taps done without anesthesia to study the neurological effects of syphilis (Heintzelman, 2003). Periodic assessments were completed on the patients and they were told they were being treated for “bad blood”, a local term used to describe certain ailments which included anemia, syphilis, and anemia. Physicians involved with this study were told to not treat the men and to follow them to their death. In 1945 Penicillin became the accepted treatment for syphilis but the men in the study were not offered it. In 1972, the first news article was published condemning the Tuskegee Study and an Ad Hoc Advisory Panel was appointed by the Assistant Secretary for Health and Scientific Affairs to review the study. The panel found that there was no evidence that the men were informed of the study or its real purpose as they were not given all the facts to provide informed consent. The advisory panel also found that the men involved in the study were never given the choice of quitting the study, even when penicillin treatment became widely used. The study ended in in October of 1972 as the panel concluded that it was ethically unjustified noting that little information was gained when compared with the risks posed for the participants. In 1974, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created to identify basic principles of research conduct and suggested ways to make sure the principles were followed (“Tuskegee Study and Health Benefit Program – CDC – NCHHSTP,” 2018).
When reading about this study I asked myself how the participants in the study would have reacted had they been given full disclosure about the research methods prior to the study. I think that had the participants known that the physicians would not tell them their diagnosis, refuse to treat them for the debilitating disease, and actively deny some of them treatment most would have not participated. The risk of this study outweighed the benefits of participation. There are many ethical issues with this experiment such as informed consent, withholding treatment known to be effective, protecting the interests of the individual patient, and deciding when to withdraw a patient from the study (Friis & Sellers, 2014). Informed consent, which refers to informing potential research participants about all aspects of the research that might reasonably influence their decision to participate, was the main ethical issue in this study. The men in this study agreed to participate and thought they would be treated but in fact did not receive the proper treatment needed to cure their illness. Another ethical issue is that researchers took advantage of a deprived socioeconomic situation in which the participants had experienced low levels of care. The lives of those black men and their families were mostly ruined after this study as many of them died from complications of syphilis. There has been research that suggests that the ill effects of the Tuskegee Study extend beyond those men and their families to the greater whole of black culture. There is mistrust of physicians and the medical system by black patients who are more likely to believe medical conspiracies. The awareness of the Tuskegee study is exactly what eroded trust as it was identified by researchers as a contributor to health disparities in the first place. The disclosure in 1972 made the system less abusive and led to reforms that established medical ethics and protections for disadvantaged people (Heintzelman, 2003).
References
Friis, R. H., & Sellers, T. A. (2014). Epidemiology for Public Health Practice (5th ed.). Burlington, MA: Jones & Bartlett Learning.
Heintzelman, C. A. (2003). The Tuskegee Syphilis Study and Its Implications for the 21st Century. New Social Worker, 10(4), 4–6. Retrieved fromhttp://ezproxy.snhu.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=11504864&site=eds-live&scope=site
Tuskegee Study and Health Benefit Program – CDC – NCHHSTP. (2018, October 3). Retrieved February 11, 2019, from http://www.cdc.gov/tuskegee/index.html
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