The Legacy of Tuskegee: Investigating Trust in Medical Research and Health Disparities

Dennis J. Spencer
SNMA National Treasurer
M.D.-Ph.D Candidate, Cornell University –Weill Cornell Medical College

What was done cannot be undone, but we can end the silence … We cannot be one America when a whole segment of our nation has no trust in America. We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry. (Clinton, 1997)

This apology offered in 1997 by then President Bill Clinton uncovered painful sores that many would like to believe had healed long ago. It is only recently that a growing number of social scientists have appreciated that persisting disparities reflect more than simple socioeconomic and educational parity. By examining the long-term psychological effects of Tuskegee, it becomes apparent that some African-Americans have lost all trust in their former abusers—the medical establishment—unintentionally perpetuating health disparities in their communities.

Originally projected to last six months, the “Tuskegee Study of Untreated Syphilis in the Negro Male” designed to understand the natural progression of this potentially deadly venereal disease would span forty years, from 1932 to 1972. Under the aegis of the U.S. Public Health Service (PHS), 600 black men were coerced into the study by announcements made at churches and in cotton fields promising free medical care.  Of these “willing” participants, 399 had syphilis with 201 unaffected men used as controls (Jones, 1993) (Wise et al., 2000). Even as their patients went blind and insane from advanced syphilis, the government-appointed doctors withheld treatment, remaining committed to observing their subjects to the predetermined “end point”—often an autopsy. The PHS went so far as to override the U.S. Army’s mandatory penicillin treatment for veterans of World War II that were subsequently diagnosed with the disease. At no point during the study were the men even informed that they suffered from syphilis. (Thomas et al., 1991)

The unethical deception was further compounded by the fact that these egregious experiments were conducted with the full knowledge and support of the scientific community. Throughout the forty-year study, numerous medical journals published the findings with the PHS even sharing results at a 1936 American Medical Association (AMA) meeting (Washington H., 2006).

As Tuskegee was neither the first nor the last government-aided assault on minority communities, these scars have continually been agitated, thwarting the healing process. America’s first medical betrayal of African-Americans traces to slavery. At a time when slaves were commonly denied proper medical care and their consent was not required, investigators would simply approach slave masters for test subjects (Washington H., 2006). From testing new surgical techniques to grave robbing for Medical School Anatomy labs, the lore of medical exploitation is a longstanding concept in the African American tradition. (Gamble, 1997) (Washington H., 2006)

Present day pessimism and paranoia concerning biomedical research and the care provided by medical professionals serves as an innate response primed by deplorable precedents. With the emergence of HIV as an important contemporary heath disparity, early ambiguities regarding the causative virus (HIV) and its associated syndrome have led many African-Americans to thoughts of conspiracy (Thomas et al., 2000). In fact Dr. Stephen B. Thomas, the director of the Institute for Minority Health at the Rollins School of Public Health of Emory University, surveyed close to 1,000 black church members in Georgia and found that 35 percent believed in an AIDS conspiracy with another 30 percent not willing to rule it out (Gamble, 1997) (Thomas et al., 1991).

Stemming from this initial apprehension, some suspected that the anti-HIV drug AZT (azidothymidine) would specifically poison African-Americans. AZT (later known as zidovudine) was approved in 1991 by the Food and Drug Administration (FDA) as the first effective pharmaceutical against HIV infection. In February 1991, however, the Veterans Administration Cooperative Study 298 provided fodder for the community’s fears by erroneously asserting to the FDA’s Antiviral Drugs Advisory Committee that zidovudine treatment resulted in transitory benefits for whites with neutral or harmful effects for black and Hispanic patients (Lauritsen, 1991).

Subsequent rigorous studies soon revealed that AZT was in fact efficacious for both minorities and whites, but the lore of toxicity had already become well fixed in the minds of patients as well as some physicians (Washington A., 2007).  Fearful the African-American community would never embrace AZT to the same degree as the white community. This unwillingness in the black community to trust AZT recommendations resulted in increased rates of progression from HIV to AIDS, thus contributing to the observable health disparity that has persisted into the new millennia.

Dr.  Thomas not only acknowledges the effects of the Tuskegee study on HIV treatment efforts in the African-American community, but also proposes it is the primary reason why blacks are more reluctant than whites to have their children vaccinated (Gamble, 1997). Adding Gardasil, the new Human Papillomavirus Virus (HPV) vaccine, to the list of mandatory immunizations for young girls has been met with particularly fervent opposition in some African-American communities. Nationally syndicated columnist Deborah Mathis reported to BlackAmericaWeb.com that “There is no doubt that some black parents will not allow their daughters to be immunized against HPV because of Tuskegee…Ever since [Tuskegee], black people have been suspicious of government needles.”( Washington A., 2007)

The Washington Afro-American, a local paper in Washington, D.C. and Baltimore, published an editorial that additionally draws parallels between mandatory immunizations and the Tuskegee experiments. They assert the vaccination is an attempt to restrict the reproductive rights of blacks, further proclaiming that the government should “stop trying to shove it down our throats.” Accompanying the article was a cartoon featuring a young girl cowering from a huge syringe wielded by Uncle Sam in a Merck pharmaceuticals lab coat (Washington A., 2007).

The local paper is particularly vested in the subject since David Catania, a white D.C. council member, introduced legislation in February 2006 that would require girls younger than 13 to receive the vaccine as a requirement for school. The fact that Catania suggested that the females in his jurisdiction—mostly brown and black girls—should be immunized evoked images of forced sterilization or mandatory birth control for some of his constituents (Washington A., 2007). “We can’t deny the history of what has happened because of bad public health practices, but let’s be clear…Tuskegee was about medicine that was available that could have [cured] a disease. The HPV vaccine is about preventing a disease”, said Pernessa Seele, founder and chief executive of the non-profit organization The Balm In Gilead, Inc. (Harris et al., 1996)

Over time, the Tuskegee legacy has undergone transformation from science to conspiracy to metaphor. The current distrust that exists in America between the African-American community and the “medical establishment” serves as a continual reminder of past abuses. The African-American community has a unique perspective, one that began steeped in exploitation. While there have been obvious improvements in access to good health care, fear and suspicion remain. As with any wound, this relationship requires time to fully mend.  President Clinton’s apology provided a first step, recognizing and accepting the government’s role in perpetuating this crucial contributor to heath disparities.  The salve the current administration may be able to apply with sweeping health care reform might be yet another step. Nevertheless, after 300 years of picking at the initial scab, the scar’s mark may never fully disappear.

REFERENCES
Clinton WJ. (1997). Presidential Apology. [Transcript]. Retrieved from CDC website:
http://www.cdc.gov/tuskegee/clintonp.htm

Gamble VN. (1997). Under the shadow of Tuskegee: African Americans and health care”. Am J Public Health. 87(11): 1773–1778.

Harris Y, Gorelick PB, Samuels P, Bempong I. (1996). Why African Americans may not be participating in clinical trials. [Review]. J Natl Med Assoc. 88(10):630-4.

Jones JH. (1993). Bad blood: the Tuskegee syphilis experiment. New York: The
Free Press.

Lauritsen J. (1991, March 4). FDA Has Second Thoughts On AZT. The New York Native. Retrieved from  http://duesberg.com/articles/jlsecond.html

Thomas SB and Quinn SC. (1991). The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community. Am J Public Health. 81(11): 1498–1505.

Thomas SB and Quinn SC. (2000 , January/February). The Legacy of Tuskegee: AIDS and African-Americans. Body Positive Magazine. Retrieved from: http://www.thebody.com/bp/jan_feb00/tuskegee.html

Washington A. (2007, January 12). Hold Back Knee Jerk Reactions on HPV Vaccine. The Washington Times

Washington H. (2006). Medical Apartheid: The Dark History of Medical Experimentation on Black Americans. New York: Double Day.

Wise PH, Kotelchuck M, Wilson ML, Mills M. (1985). Racial and socioeconomic disparities in childhood mortality in Boston. N Engl J Med. 8;313(6):360-6.

This article first appeared in the Summer 2010 JSNMA, Volume 15, Number 4

Filed Under: Scientific Focus

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About the Author: publications@snma.org

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  1. Cameron says:

    Of course, the abuses of the US Public Health Service were not limited to the US. President Obama issued an apology on Friday, October 1, 2010 for a parallel human rights violation by the PHS and the NIH in Guatemala (http://www.cnn.com/2010/WORLD/americas/10/01/us.guatemala.apology/index.html).

  2. Amps says:

    This is a great article brings light to the Tuskegee incident. I think we focus a lot of time and effort on trying to connect this incident to why so many A.Americans have a distrust in the American Health system, when in reality a lot of A.Americans have no knowledge of this incident even taking place. I feel that it is very important for people to hear about the Tuskegee studies, but it is hard for me to blame our distrust in the health care system based on that. Now I will admit race does play a large part in, and this event might even effect a small population of A.Americans whose families were directly effected by the studies. But I fell that in order to analyze our “distrust” in the health care system we must look at a ecological level, how our culture, upbringing, predetermined racial and gender norms effect an individual and their participation in the health care field. The average A.American avoids the doctor more so today because of the cost, not the Tuskegee Syphillis studies.