This guest post is by Dr. Susan Reverby, the Marion Butler McLean Professor Emerita in the History of Ideas and Professor Emerita of Women’s and Gender Studies at Wellesley College. This year she is a fellow at the Project on Race and Gender in Science and Medicine at the Hutchins Institute for African and African American Research at Harvard University. Reverby is most recently the author of the multiple prize winning book, Examining Tuskegee: The Infamous Syphilis Study and its Legacy and the historian whose work on immoral U.S. led research in Guatemala in the late 1940s led to a federal apology in 2010. She is currently completing her latest book, The Revolutionary Life of Brother Doc: A 20th Century White Man’s Tale (University of North Carolina Press, 2020).

Conspiracy theories and myths, medical and otherwise, often reflect ways to cope with racism in its multiple nefarious forms.   Many such tales focus on destruction of the black body: from the fears that Church’s chicken, now Popeye’s, put something in their frying that caused Black men to become sterile to the beliefs in South Africa that the HIV virus was spread by false vaccinations funded by the C.I.A. and British intelligence. Did you hear the one about the U.S. government letting hundreds of black men in and around Tuskegee, Alabama with syphilis not get to treatment that went on for four decades between 1932 and 1972?  Or that the government actually gave the men the syphilis and you can see it in the photographs, especially if you cannot differentiate between a blood draw and an injection?

Only the fact that the government tried to make sure the men who already had late latent syphilis did not get treatment for forty years is true among these tales, and horrendous enough. Now we have to consider the meaning given to this Study over the nearly fifty years since it became widespread public knowledge.

The exposure of the Study came at the end of the modern Civil Rights era and after the medical community was beginning to acknowledge that even the “good guys” did immoral work. Along with the unethical studies at Willowbrook [1] and the Jewish Chronic Disease Hospital [2], the experiment in Tuskegee led to the federal Belmont Report [3] and the modern era of institutional review boards and regulations surrounding informed consent.

For many in the health care community and general public the words “Tuskegee” became symbolic of racism in medical research and care, making its way into popular culture in songs, plays, poems, rap, and cultural imagination.   In 2006, Hugh Laurie (T.V.’s irascible Dr. House) hosted Saturday Night Live and played the wife in a skit with patient Kenan Thompson. When the doctor offers care to Thompson, Laurie and Thompson both look at one another and yell “We know what this is: Tuskegee, Tuskegee, Tuskegee.” Others have done academic studies that prove and disprove that it is the memory of Tuskegee that keeps African American patients from seeking care or participating in research trials.  What we do know is that the subtle, and not so subtle, forms of racism create an aura of distrust that affects the kind of health care African Americans both seek and receive whether they know the details of what happened half a century ago or not.

So can there be another Tuskegee?  If by this question we mean the misrepresentation in informed consent, the danger of scientific hubris, and the misuse of patients of color:  probably in some form. Just as importantly, we need to ask what meaning is given to these experiences once they become public? How can the health care and public health communities create what historian Vanessa Northington Gamble calls “trustworthiness.”  It is the meaning of the study in Tuskegee that needs to be assessed, taught and considered. For it is this meaning that reverberates long after the men caught in its grasp wandered in the medical desert for 40 years, and long after any knowledge of its facts actually fade.

Join Susan Reverby along with moderator Aletha Maybank and Monique Guishard for our panel on February 26th, Could Tuskegee Happen Today?, addressing the history and legacy of the study and why it remains relevant today.

Footnotes

[1] J.D. Howell, R.A.Haywood, “Writing Willowbrook, Reading Willowbrook: The Recounting of a Medical Experiment. In: J. Goodman, A. McElligott and L. Marks, eds. Using Bodies: Humans in the Service of Medical Science in the 20^th Century (Baltimore: Johns Hopkins University Press, 2003), pp. 190-213.

[2] Barron H. Lerner, “Sins of Omission—Cancer Research without Informed Consent,” New England Journal of Medicine 351 (2004): 628-630.

[3] Office of the Secretary, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, April 18, 1979.