Rethinking Teaching About the USPHS Untreated Syphilis Study at Tuskegee: A Revision that Centers Resistance

In my classes I encourage students to revise their lab reports and essays, and like most teachers I also do minor tweaks of my lessons from year to year. But large-scale overhauls of my favorite lessons are more difficult and less common. A mixer I wrote (published in Rethinking Schools in 2016) on the United States Public Health Service (USPHS) Untreated Syphilis Study at Tuskegee (formerly known as the Tuskegee Syphilis Study) got such an overhaul for dual purposes — to teach virtually and to center resistance and agency over victimization. 

This study followed approximately 600 African American men from Macon County, Alabama, from the early 1930s until it finally ended 40 years later after an article came out exposing how these men were denied treatment — including penicillin, which was widely available since the mid-1940s. Of the men, 399 had an active syphilis infection, and by the late 1960s at least 28 but possibly up to 100 had died from syphilis. While the study was originally funded by a philanthropist from Chicago to look for treatment or a cure, the USPHS altered the design to be a “study of nature” and not an experiment.  Dr. J. E. Moore, a textbook author on STIs from the time, wrote that “syphilis in the negro is in many respects almost a different disease from syphilis in the white,” and Dr. O. C. Wenger, a doctor from Hot Springs, Arkansas, wrote that the USPHS study “will emphasize those differences.” Dr. Thomas Murrell, a key USPHS doctor in the study, spelled out a primary reason the study became what it was: “So the scourge sweeps among them. . . . Perhaps here, in conjunction with tuberculosis, will be the end of the negro problem. Disease will accomplish what man cannot do.” This study is a primary example of medical racism and is still under-taught in both science and social studies classrooms.  

In the original lessons, my students did a mixer, taking on the roles of people involved. They played the white doctors who engineered the study to withhold antibiotics from African American men suffering from syphilis. They played the men themselves, learning about the lack of medical care in rural and segregated Macon County, Alabama, and how the men eventually found out that this decades-long study did not involve any actual treatment for a curable disease. They played the role of Peter Buxtun, a whistleblower with the USPHS, and Jean Heller, a journalist who broke the story in the early 1970s. The students then wrote a testimony from the perspective of one of the roles to be delivered at the congressional hearings that followed Heller’s article. I taught this as an introduction to bioethics in a biotechnology class with juniors and seniors. When I wrote this lesson I taught at Jefferson High School, a school in Portland, Oregon, that at that time had a predominantly African American student population. I now teach in rural northwest Washington at a Title I high school where students of color make up approximately 55 percent of our population, with about 45 percent identifying as Latinx. 

When school and professional development went online in the spring of 2020, I taught this lesson to science teachers around the country who were looking for lessons that highlight social justice. I began to revise the lesson hoping to find a format that would work on Zoom — but the renewed discussion about Black resistance and agency in the wake of the 2020 Black Lives Matter protests also encouraged me to take another look at the lesson’s content. I wondered whether the previous version of the lesson focused too much on the men in the study as victims. I wanted to emphasize how the men in the study made efforts for justice that led to major changes in the way medical research is conducted, including the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research as part of the National Research Act. The lesson still needed to detail the pain these men suffered from being in this “study” unwittingly and the human rights violations perpetrated by the doctors but also allow students to see the complexity of people simultaneously being victims and fighters for change. 

After I reworked the lesson and taught it to various groups of teachers, I felt I needed to get more information from students about how the changes might affect them. Would they be able to see more perspectives? Would they get a broader view? And, most importantly, would this help to empower students to see more actions by the men in the study? I put out a call on my social media accounts the following winter for previous students willing to meet with me virtually to discuss what they remembered from the lessons. I designed the interviews to take about 20 minutes, and I compensated students for their time. I interviewed two students from the school where I currently teach and two at the school I taught at when I wrote this unit. Connecting with past students was informative and also a delightful excuse to catch up with amazing young people.

When asked “Did you get a sense from the lesson that the men in the study fought back and changed medical history? Or did that point need to be more clear and emphasized?” Daniel Ortiz-Rojo, who graduated high school in 2016 and at the time of the interview was working on a pharmacy degree, had a telling response: “I think [resistance] needs to be emphasized. I don’t remember us talking much about what the men did. . . . It sounds pretty important because it’s like you’re moving from someone who is only the victim to someone who has the agency to make change.” Another previous student, Sailor Rozema, who graduated in 2019, agreed. “The men were presented more as victims,” she said.

As I began to take a closer look at the mixer in response to student feedback, it became clear that especially for students playing someone who engineered this study or kept it going after penicillin was widely available, seeing resistance was often overshadowed by seeing the men in the study solely as victims. 

I also realized that even though I gave students the choice of which perspective to write their congressional testimony from after the mixer, most students kept with their mixer role. This meant that some students ended up spending a lot of time thinking about only one angle of the study. I also wanted to better emphasize the multifaceted roles many people played. In one of the student interviews, a former student, Anayla Warren-Premesigh, said she “felt uncomfortable and was really upset, personally upset” during the lesson. “When you are a part of that group, it reminds you of the ongoing mistreatment of Black people.” She remembered taking on the role of a white doctor and said “it was difficult to connect” to the role. Of course, the purpose of including white perpetrators was not to have students “connect” with them, but to better understand how people conducting the study justified their actions and in doing so, help students identify racist justifications still made today. Nevertheless, the way Anayla spoke about playing this role and writing the doctor’s testimony years later made it clear that for some students the key takeaway was not the full scope of what the men accomplished during the congressional hearings and the class action lawsuit their testimony inspired.

The Lesson Changes

The heart of the revision was to refocus the lesson on resistance and resilience of the targets of the study and the allies in the USPHS. The method of delivery changed from a mixer to a card sort. Card sorts are often used in science classrooms to categorize or classify organisms or other things. A very simple example of this would be giving students a set of cards with pictures of cells on them and having them sort the cards into “eukaryotes” or “prokaryotes.” Using a card sort for this lesson obviously takes much more care than sorting out cells. A cell either has a nucleus or it does not, but the people involved in this study could fit into more than one category or could start in one category and move into another as time progressed. We are categorizing the roles of people in this study, and so we are not really sorting people but rather a part of their story and how their actions in the study affected others. I used the same descriptions of people’s actions and roles in the study that I used for the mixer to make cards, adding pictures when I could find them and several new cards. 

The categories for this card sort are Perpetrator/Oppressor: Someone who harms or oppresses others; Target: Someone who is the focus of mistreatment; Bystander: Someone who sees the injustice but doesn’t speak out; and Upstander/Ally: Someone who took action on behalf of someone else. The inspiration for the categories came from an activity I saw used by an English teacher when doing character analysis of a novel. The categories could easily vary from lesson to lesson, and the categories can also be changed as our language evolves (for example, I used the word “target” instead of “victim”). This card sort also serves the purpose of students explicitly naming the perpetrators of the harm caused by the study. Students also now explicitly name the people taking action against the study.

In the fall of 2021, I finally got to teach the revised lesson to students in person. With laminated cards for each of the roles and copies of the injustice chart printed on legal size papers, I split up my Biotech class into groups of four. We used Charles Pollard’s card as an example in class before starting the card sort. 

“Target because he was in the study,” Necia called out.

“Could he be in two categories? Could he also be an upstander?” Quan asked.

 “Yes, some of the people involved in this study are both, and some might be even more than two categories,” I answered. 

As I rotated from group to group, listening in, I heard students paying attention to how different people played different roles. “Almost all of the targets are also upstanders for the other men in the study,” Maya noted. “Herman Shaw, Charles Pollard, the man who didn’t get into the Army: They all ended up speaking out when they found out what happened to them.” Will also questioned, “None of the doctors or nurses directly involved with the study did anything to be an ally. Why didn’t any of them see how racist this was?” Students nodded in agreement, and one student replied, “That was how it was back then, and now, too, in a lot of ways.”  The students were able to see that very few people involved in this study fit into one category and some fit into different categories as the study went on. This complexity was an integral part of the discussions, which allowed for students to push past the narrowness of the categories. 

“Why did it take a newspaper article for the study to stop? Why didn’t they stop when Dr. Jenkins told the supervisors?” Quan asked. 

“This is the stuff that has to be exposed to stop. None of us would have known about George Floyd without people posting about it and protesting,” Necia replied. Seeing all the roles let the kids work together to co-create these ideas and connections through conversations as they learned about the people in the study. 

In the previous version of the lesson, this level of discussion happened only after the mixer was complete, when students had a fuller picture of the study and how it ended. 

There were two additional changes I did to center resistance in the lesson. One was that I added two key roles: Bill Jenkins and Fred Gray, both strong allies to the men in the study and both Black men. While the original lesson discussed both men, the omission of Jenkins and Gray from the descriptions of people involved in the study was problematic and needed to be corrected; by not including them as their own roles, I was whitewashing the history, particularly in the case of Bill Jenkins. The CDC timeline we use does the same: “1968 Concern raised about ethics of study by Peter Buxtun and others,” with “others” including Bill Jenkins. Bill Jenkins had worked tirelessly to blow the whistle about the study while at the USPHS in the late 1960s, and he went on to do incredible work in diversifying public health leadership in the United States. Giving Peter Buxtun, a white man, full credit for whistleblowing, was an error in my original lesson. Fred Gray, famous for representing Dr. Martin Luther King and Rosa Parks, was the chief counsel for the men and their families when they sued the U.S. government for letting this study go on. His powerful actions needed to be highlighted to show how taking a stand against the racist medical practices led to positive systemic changes in how research is conducted in the United States. 

Here is an example of one of the cards:

Dr. Bill Jenkins

I was working as a statistician for the U.S. Public Health Service (USPHS) when I first came across information about the syphilis study in 1968. I was hired in 1967, and I was one of the first Black people employed by the USPHS, but surely others thought this study was unethical. When I brought it up with my supervisor, I was told, “Don’t worry about it.” I was a voters’ rights activist when I was younger, registering Black people to vote in the South, and I knew this study was hurting people. I wrote up an article about the study for my anti-racist newsletter and distributed it to other African American doctors and scientists, anyone who would listen. But the article was never picked up in the mainstream media and the study continued. After another USPHS worker, Peter Buxtun, ended up getting a big newspaper article written by Jean Heller, the study stopped but my work continued. I worked in the Participants Health Benefits Program to help the men in the study. Then I went on to get my doctorate, and I devoted my career to increasing the number of Black people in public health leadership. I founded the Master of Public Health Program at Morehouse, my alma mater. I said about the Tuskegee Study later during a talk: “Things that start with a good purpose could end up being a very bad thing.” We need to keep working to make sure this type of study doesn’t happen again.

The other major change to center resistance comes after the students sort the cards into categories. At this point they solely focus on how resistance to the injustices of the study led to change. “Use what you’ve put together from the stories about the people to think about what stopped the study,” I told my class. After small group discussions we shared out with the whole group. “The newspaper article by Jean Heller got everyone to pay attention,” Necia’s group decided. “Jean Heller wouldn’t have known about it without Peter Buxtun,” countered another group. “We think it was Buxtun and Dr. Jenkins trying to get it stopped at the Public Health Service.” Maya’s group brought it back to the men in the study: “Once Charles Pollard and those guys found out, they stopped it!” 

“What if we’re all correct?” I asked them. “What if it’s all this together that stopped the study? Think about how multiple things led to stopping the study and then ultimately changing the way human subjects are treated. With your group, write down ways people involved changed things.” Students used the cards to identify the various ways people involved in the study acted to resist the study. They name the action and the outcome. For example, a student group wrote “Charlie Pollard met with Fred Gray” for the action and the outcome was “The men grouped together to sue the government for what the doctors did.” 

The students can see that change doesn’t come from one event but rather from a group of people working toward the same goal. From here the students then choose one perspective from the cards to write from and craft a testimony that might have been spoken at the congressional hearings in 1973. The unit then follows the same timeline as was previously written with a greater emphasis on the National Research Act (1974) and subsequent changes to human subjects rules that resulted from the congressional hearings on the study. 

I found that the students’ testimony writing focused more on resistance after this updated version of the lesson. In addition, none of the students chose to write their testimonies from the perspective of the white doctors who engineered and carried out the study. The students picked the men in the study, the nurse who worked directly with the men, the whistleblowers, the journalist, and the lawyer for the men. I was gratified that all students wanted to identify with and speak on behalf of the allies and targets of the study: 

When I talked to Charlie Pollard about the Tuskegee study, I knew that I wanted to give them a say and make sure that their voice about the study was heard. I wanted the world to see how racist this study was because you could see that they only used people of color and how most of the doctors who were involved in the study were white people. Since I had already dealt with a case similar to this with Rosa Parks and I was successful at making sure she didn’t get charges, I knew that he came to me because he wanted to know for sure that I was able to get them a case so that they wouldn’t continue this awful study and they would be free from what these doctors were doing.
—Nydia as Fred Gray

These men should not be denied treatment, they deserve the best medical care we can provide. I was an activist earlier on in my life, so when I caught wind of this unethical and unjust study I knew something needed to change. I reached out to my supervisor so they could hear my concerns about the study, but they told me not to worry about it. I later learned that my supervisor was monitoring the study. I couldn’t stop worrying about it, I knew I had to do more. Some colleagues and I wrote an article and sent it to other African American doctors, also some reporters.
—Marquis as Dr. Bill Jenkins

By using valuable feedback from former students and test-driving the changes with fellow educators, I was able to rework the lesson to better honor the men in the study and their fight against a terrible injustice in medical history. Students explicitly named how people fought back against the study’s continuation and what changed because of the resistance. The revisions have been a powerful step toward a more empowering lesson. 

For teaching materials related to this article, click below:
USPHS Untreated Syphilis Study at Tuskegee Card Sort