Tuskegee syphilis experiment

[[File:Tuskegee-syphilis-study doctor injects subject with placebo.gif|thumb|right|200px|Dr. Asshole injects a subject with a placebo.]]
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The '''Tuskegee syphilis experiment''' was a research study, sponsored by the United States Public Health Service and conducted from 1932 to 1972, which followed 600 men, of which 399 had [[syphilis]]. Despite the availability of effective treatment using penicillin (after 1943<ref>Frith 2012. [http://jmvh.org/article/syphilis-its-early-history-and-treatment-until-penicillin-and-the-debate-on-its-origins/ Syphilis – Its early history and Treatment until Penicillin and the Debate on its Origins]. Journal of Military and Veterans' Health, 20(4)</ref>), participants were not informed of their syphilis-positivity, provided with treatment, or even informed of the possibility of treatment. Begun as an attempt to replicate and improve on a similar study in Oslo, [[Norway]]<ref name="oslo">[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1054082/ The Oslo Study of Untreated Syphilis Review and Commentary] by L. W. Harrison ''Br. J. Vener. Dis.'' 1956 Jun; 32(2): 70–78.</ref> the Tuskegee Study became one of the main motivators for changes in ethical research practice.

==History==
===Purpose===
Initially, the Tuskegee study aimed to investigate the natural history of syphilis among [[African-American]] men over a 6-month study period. The study was inspired, in part, by a prior study in Oslo (called the Oslo Study, for some reason) which followed untreated early stage syphilis-infected people.<ref name="oslo"/> The Tuskegee Study focused, instead, on those with later-stage disease. In order to gain the active cooperation of the Tuskegee Institute,<ref>Although cooperative, there is some doubt whether the US PHS fully informed the Tuskegee Institute of the full study plans.</ref> the institute was promised "its full share of the credit".<ref>[http://www.cdc.gov/tuskegee/timeline.htm The Tuskegee Timeline]</ref>  While initial plans were to treat infected participants after the trial period ended, funding for treatment fell through<ref>Due to an odd blip in history known as the [[Great Depression]]</ref> and the study was extended as a long-term prospective study of syphilis in African-American men.

[[Racism]] and syphilis aren't strangers. One physician proposed that syphilis and tuberculosis together will "be the end of the negro problem."<ref>Murrell 1906. [https://books.google.com/books?id=JkM2AQAAMAAJ&lpg=PA305&ots=XtxBGTEHNd&dq=%22Syphilis%20%20in%20%20the%20%20Negro%3A%20%20Its%20%20Bearing%20%20on%20%20the%20%20Race%20%20Problem%22&pg=PA305#v=onepage&q&f=false Syphilis in the negro; its bearing on the race problem]. American Journal of Dermatology and Genito-urinary Diseases, 10(8):305-307</ref> In fact, one of the appealing aspects of the study is the belief that African-Americans afflicted with syphilis wouldn't seek treatment, making it an excellent natural study of the process of the disease.<ref>Brandt, AM 1977. [http://dash.harvard.edu/bitstream/handle/1/3372911/Brandt_Racism.pdf?sequence=1 Racism and Research: The Case of the Tuskegee Syphilis Study]</ref>

===Enrollment===
Potential study participants were sent a letter on official Macon County Health Department letterhead (the [[Alabama]] county of the Tuskegee Institute) mentioning prior receipt of treatment for "bad blood".<ref name="kennesaw">[http://science.kennesaw.edu/~echen1/Bioethics/Readings%20and%20slides%20for%20Quarter%201/Quarter%201%20slides/Tuskegee%20Study.pdf]</ref> In Macon County, "bad blood" was a term used to describe a number of conditions including syphilis and anemia. Potential participants were promised both free medical treatment and benefits for their survivors.<ref>[http://www.tuskegee.edu/about_us/centers_of_excellence/bioethics_center/about_the_usphs_syphilis_study.aspx About the USPHS Syphilis Study]</ref> This potential benefit was no small thing, taking place in a relatively poor county during the [[Great Depression]]. Today, such an offer might be discussed as coercive, offering something so meaningful that it is nearly impossible to refuse.

===Followup period===
During the study itself, participants underwent various procedures due, in part, to the deception of the research team. For example, participants were encouraged to receive spinal taps (a painful procedure) in letters titled "Last Chance for Special Free Treatment."<ref>The Huntington Historical Society: [http://www.huntingtonhistoricalsociety.com/1932-last-chance-for-special-free-treatment 1932 – Last Chance For Special Free Treatment]</ref>

However, during the followup period, participants were not just not offered treatment, they were actively and covertly denied treatment. During [[World War II]], many participants were enrolled in the military and were tested for sexually transmitted diseases. Control group participants who tested positive went untreated due to the efforts of the study's researchers.<ref>Gray 2013. [https://books.google.com/books?id=yTpse3iEMA8C&lpg=PA61&ots=Ia1mIL8Fsp&dq=%22So%20far%2C%20we%20are%20keeping%20the%20known%20positive%20patients%20from%20getting%20treatment.%22&pg=PA61#v=onepage&q&f=false The Tuskegee Syphilis Study: An Insiders' Account of the Shocking Medical Experiment Conducted by Government Doctors Against African American Men ]</ref> During the study period, Macon County physicians were told ''not'' to provide antibiotics to study participants.<ref name="kennesaw" />

===Compensation===
In 1974, study participants and their heirs divided up a $10,000,000 settlement with living syphilis-positive participants receiving the largest sum of $37,500. In addition to the lump sum, infected family members received lifetime medical benefits with as many as 12 participants' children still receiving benefits.<ref>US Public Health Service Syphilis Study at Tuskegee [http://www.cdc.gov/tuskegee/faq.htm Frequently Asked Questions]</ref>

==Results==
[[File:Table depicting number of participants in the Tuskegee Syphilis Study showing number of patients with syphilis and... - NARA - 281642.tif|thumb|Table depicting number of participants in the Tuskegee Syphilis Study showing number of patients with syphilis and… &mdash; NARA &mdash; 281642]]
While very little useful medical information emerged from the study, it does appear that syphilis ... umm ... happens.<ref>[http://commons.wikimedia.org/wiki/File:Table_depicting_number_of_participants_in_the_Tuskegee_Syphilis_Study_showing_number_of_patients_with_syphilis_and..._-_NARA_-_281642.tif]</ref> That's not to say that no scientific results emerged, just that those that did emerge were obscured by the horror of systematically denying treatment for what turned out to be a treatable disease. Findings included 20% lower life expectancy, details on the cardiovascular impacts of syphilis, and that treatment helps.<ref name="McDonald">McDonald CJ 1974. [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2609140/pdf/jnma00485-0035.pdf The Contribution of the Tuskegee Study to Medical Knowledge] Journal of the National Medical Association, 66(1):1-7</ref>

Despite producing ''some'' new information, the study itself was flawed. By restricting the sample to one narrow demographic, it could hardly be called generalizable.  Finally, the only real constant in the study were the participants themselves. Research staff and protocols changed frequently.<ref name="McDonald" /> Most notably, 42% of study participants ended up receiving some treatment for syphilis in the first 7 years (77% by year 30), invalidating the emphasis on the effects of untreated syphilis.<ref>Rockwell DH, Yobs AR, and Moore MB 1961. "The Tuskegee Study of Untreated Syphilis. The 30th Year of Observation." Arch Int Med, 111:792-798.</ref>

==Consequences==
===Mistrust===
It is commonly believed that the Tuskegee study led to increasing distrust between African-Americans and medical researchers.<ref>[http://exhibits.hsl.virginia.edu/badblood/report/ Final Report of the Tuskegee Syphilis Study Legacy Committee — May 1996]</ref> Some of the mistrust came from a misconception that participants in the Tuskegee Study were actually injected with syphilis.<ref>Shaver VK, Lynch CF, and Burmeister LF 2000. [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2568333/ Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies.] J Natl Med Assoc. 2000 Dec; 92(12): 563–572.</ref><ref>It was the Guatamala Syphilis Experiment where purposeful infection actually happened. {{wpa|Guatemala syphilis experiments}}</ref> More recent research suggests this connection between the Tuskegee Study and mistrust of researchers is not strong, but that such mistrust and the [[racist]]/paternalistic motives of the study may, instead, emerge from underlying racial tensions.<ref>Katz, Green at al 2008.[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702151/pdf/nihms-117506.pdf The Legacy of the Tuskegee Syphilis Study: Assessing its Impact on Willingness to Participate in Biomedical Studies]. J Health Care Poor Underserved, 19(4): 1168–1180</ref>

===Belmont report===
In response to the study's obvious [[ethical]] failings, the US National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research created a report to guide ethical decisions in research design.<ref>[https://web.archive.org/web/20111017133845/http://www.hhs.gov/ohrp/archive/documents/19790418.pdf Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, Report Of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research]</ref> This report, now known as the Belmont Report identified three principles that research studies should all comply with:
#Respect for persons: people are to be treated as autonomous agents and, if incapable of such autonomy, protected from harm. By failing to fully inform Tuskegee Study participants of the full nature of the trial, researchers inadequately respected the participants.
#Beneficence: the study must, in some way, secure the well-being of study participants. By denying participants' treatment not just for syphilis but for other infectious diseases, Tuskegee Study researchers actually harmed their participants with no obvious countervailing benefit.
#Justice: among other conceptions, those who bear the burden of the trial should also benefit. Without the ultimate settlement, study participants (and their families) not only bore the burden of the research project, but actually received less benefit (due to reduced medical care) than their non-enrolled counterparts in the community.

==External links==
*{{wpl|Baltimore Lead Paint Study||,}} conducted by the [[Lead#Kennedy Krieger Institute|Kennedy Krieger Institute]]
*{{wpl|Guatemala syphilis experiments||,}} where a researcher later involved in the Tuskegee Study actually ''did'' infect healthy people with syphilis

==References==
{{reflist|2|90%}}

[[Category:Government coverups]]
[[Category:Morality]]
[[Category:Medicine]]
[[Category:Racism]]
[[Category:Social justice]]

Categories: Government coverups, Morality, Medicine, Racism, Social justice