Tuskegee syphilis experiment

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[1]), 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[2] the Tuskegee Study became one of the main motivators for changes in ethical research practice.

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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.[2] The Tuskegee Study focused, instead, on those with later-stage disease. In order to gain the active cooperation of the Tuskegee Institute,[3] the institute was promised "its full share of the credit".[4] While initial plans were to treat infected participants after the trial period ended, funding for treatment fell through[5] 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."[6] 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.[7]

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".[8] 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.[9] 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."[10]

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.[11] During the study period, Macon County physicians were told not to provide antibiotics to study participants.[8]

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.[12]

Results

While very little useful medical information emerged from the study, it does appear that syphilis ... umm ... happens.[13] 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.[14]

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.[14] 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.[15]

Consequences

Mistrust

It is commonly believed that the Tuskegee study led to increasing distrust between African-Americans and medical researchers.[16] Some of the mistrust came from a misconception that participants in the Tuskegee Study were actually injected with syphilis.[17][18] 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.[19]

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.[20] This report, now known as the Belmont Report identified three principles that research studies should all comply with:

  1. 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.
  2. 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.
  3. 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.
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References
  1. Frith 2012. Syphilis – Its early history and Treatment until Penicillin and the Debate on its Origins. Journal of Military and Veterans' Health, 20(4)
  2. The Oslo Study of Untreated Syphilis Review and Commentary by L. W. Harrison Br. J. Vener. Dis. 1956 Jun; 32(2): 70–78.
  3. Although cooperative, there is some doubt whether the US PHS fully informed the Tuskegee Institute of the full study plans.
  4. The Tuskegee Timeline
  5. Due to an odd blip in history known as the Great Depression
  6. Murrell 1906. Syphilis in the negro; its bearing on the race problem. American Journal of Dermatology and Genito-urinary Diseases, 10(8):305-307
  7. Brandt, AM 1977. Racism and Research: The Case of the Tuskegee Syphilis Study
  9. About the USPHS Syphilis Study
  10. The Huntington Historical Society: 1932 – Last Chance For Special Free Treatment
  11. Gray 2013. The Tuskegee Syphilis Study: An Insiders' Account of the Shocking Medical Experiment Conducted by Government Doctors Against African American Men
  12. US Public Health Service Syphilis Study at Tuskegee Frequently Asked Questions
  14. McDonald CJ 1974. The Contribution of the Tuskegee Study to Medical Knowledge Journal of the National Medical Association, 66(1):1-7
  15. 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.
  16. Final Report of the Tuskegee Syphilis Study Legacy Committee — May 1996
  17. Shaver VK, Lynch CF, and Burmeister LF 2000. 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.
  18. It was the Guatamala Syphilis Experiment where purposeful infection actually happned. See the Wikipedia article on Guamatala syphilis experiment.
  19. Katz, Green at al 2008.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
  20. 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
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