Remembering the Syphilis Study in Tuskegee

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?

Photograph of Participant in the Tuskegee Syphilis Study

Centers for Disease Control: Venereal Disease Branch. (ca. 1953). Photograph of Participant in the Tuskegee Syphilis Study. Image from https://catalog.archives.gov/id/824612

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.

Kenan Thompson Hugh Laurie

King, D. R. (Director).  (2006, October 28). Modern Medicine: Hugh Laurie/Beck [Television series episode].  In L. Michaels (Producer), Saturday Night Live. New York, NY: NBC.

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 20th 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.

Proposed 1920s Orphanage Study Just One Example in History of Scientific Racism

By Michael Yudell, interim chair and associate professor at the School of Public Health at Drexel University. Originally published in The Conversation.

In the late 1920s, scientists hatched an outrageous plan to settle a question at the heart of American racial thought: were differences between racial groups driven by environment or by heredity? In other words, was the racist social order of the time – white over black — an inevitable and genetically driven outcome? Or did the environment in which all Americans lived create the deep disparities and discord between races that defined the social, economic and political reality of the United States?

A committee on “Racial Problems,” jointly sponsored by the venerable National Research Council and the Social Science Research Council, discussed an experiment: create racial orphanages, separate institutions where children of different races would be received as close to birth as possible. The idea was to compare white and black children under similar conditions. Scientists could closely monitor the institutionalized children as they developed to figure out whether differences were due to innate characteristics or environmental influence. Nursery schools and foster homes were proposed as places of comparative study too, but most of committee’s discussions focused on the idea of racial orphanages.

Morton and contemporaries believed differences in skull size among races explained variance in intelligence. Here scientists fill skulls with water to measure capacity. Morton filled them with lead shot.
Washington Matthews

Science has made claims about race in America since the late 18th century, when Thomas Jefferson hypothesized that the differences between races are “fixed in nature.” In the 19th century, anthropologists such as Samuel Morton argued for a racial hierarchy of intelligence and believed human races evolved from separate origins. Eugenicists tried to quantify the hereditary nature of race difference in the early 20th century, using their science to develop social policy, including forced sterilization and anti-immigration laws. Racism has indeed left its stain on scientific thought.

The committee on “Racial Problems” was no different. Its 1930 report alleged the racial orphanage experiment could “throw light” on how heredity and environment influenced health, vigor, intelligence and sociability. To do this, scientists would try to improve the condition of the black children in the study by altering environmental factors, including shielding the children from racism, offering improved nutrition, and providing better educational opportunities than they might otherwise have had.

The idea for the experiment came from Dr Joseph Peterson, a psychologist at George Peabody College for Teachers in Nashville (now part of Vanderbilt University). Peterson wrote extensively on racial differences in intelligence. He proposed that the experimenters have “complete control” over children enrolled in the study from birth through schooling years.

The study would have experimented on children similar to those who lived at the segregated Colored Orphan Asylum in New York.
Harlem Dowling-West Side Center for Children and Family Services

At a 1930 meeting to discuss the proposal’s feasibility, concerns were raised on a number of issues. Could the differences in care between the black and white children be controlled for? Could the children be shielded from the racist world around them? And how would children be recruited into such a study?

Recruitment proved to be a sticking point. In a chilling exchange, psychologist Knight Dunlap from Johns Hopkins and Clark Wissler, an anthropologist at the American Museum of Natural History, discussed “the difficulty of obtaining children.” Dunlap worried about the “difficulty in getting a perfect sampling of children away from their parents.” Wissler’s response: “Suppose you took infants completely at random. If we are interested in the question of how much the actual life creates bias, shouldn’t you have random selection?” The committee went on to debate whether it would be more “desirable in this study to take orphans, in order to be free from the home environment” or whether “taking negro children away from negro families” would be better for the proposed experiment.

What Dunlap and Wissler meant when they talked about “taking” children from black families isn’t clear. Whether they wanted to forcibly remove black children from their homes or had in mind some form of consent or some incentive, is unknown. It’s ironic that the closest the committee came to any level of concern for the children was wondering what would happen to black children raised in an environment shielded from racism once they became adults, left the orphanage, and experienced the full force of American racism.

By today’s standards, such an experiment seems preposterous and disgraceful. Preposterous because of the implicit and explicit racism that shaped and limited such a study. Disgraceful both because of the inferiority committee members ascribed to an entire race – even while debating an experiment to see if that alleged inferiority was or was not innate – and because there was no consideration of the ethical implications of placing children in an orphanage under experimental conditions.

The only good news in this history is that the study never went forward. By 1931, the idea for racial orphanages died.

Blood being drawn from one of the Tuskegee study subjects.
Centers for Disease Control and Prevention

Yet, at that same time, preparations were beginning for another awful and unethical racial experiment. Beginning in 1932, the notorious “Tuskegee Study of Untreated Syphilis in the Negro Male” was in the earliest stages of its forty year study. Like the proposed racial orphanages experiment, it was a federally sponsored project and assumed that traits believed to be unique to African-Americans and whites were worthy of both study and expense.

These studies of race — proposed and actual — assumed difference and inferiority. Such presumptions fueled unethical behavior, from the denial of effective medical care for the men in the Tuskegee Study to the proposal to take children from their families to place in an orphanage. It is somewhat heartening that neither study would win approval today thanks to ethical safeguards put in place in part because of the fallout from the Tuskegee Study.

Though the deeply rooted racism of the proposed racial orphanages experiment is today largely absent from science, science still struggles with the meaning of race. Today mainstream scientists utilize race in studies of human evolutionary history, to study the distribution of health-related traits within and between groups, and to use an individual’s ancestry to help determine the best medical treatments.

But this too is not without controversy. Many scientists argue that race is an imprecise marker of human genetic diversity and a poor proxy for predicting disease risk or drug response. As experiments like the racial orphanage and Tuskegee studies remind us, the scientific and social meanings of race are inseparable. The use of race in scientific study is problematic at best and dangerous at worst.

The Conversation

This article was originally published on The Conversation.
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