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From 1932 to 1972, the United States Public Health Service and the Centers for Disease Control and Prevention operated an extremely unethical medical experiment on the effects of outcomes of untreated syphilis. Hundreds of poor Black men from Macon County, Alabama were enrolled in the study, and treatment for syphilis was withheld from them. Even after antibiotics became available that could cure syphilis, these men were left to suffer from the disease and to expose their families to syphilis as well. Today we're learning about the Tuskegee Syphilis Experiment, a shameful example of racism in American medicine, and a tragedy that still impacts how many Black Americans think about healthcare today.

Clint's book, How the Word is Passed is available now! https://bookshop.org/a/3859/9780316492935

VIDEO SOURCES

● Susan Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill, N.C.: University of North Carolina Press, 2009).
● Susan Reverby ed., Tuskegee’s Truth’s: Rethinking the Tuskegee Syphilis Study (Chapel Hill, N.C.: University of North Carolina Press, 2000).
● Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Penguin Random House, 2008).
Nia Johnson. Expanding Accountability: Using the Negligent Infliction of Emotional Distress Claim to Compensate Black American Families Who Remained Unheard in Medical Crisis. Hastings Law Journal. (Forthcoming, Summer 2021).
Brandt, Allan M. 1978. "Racism and research: The case of the Tuskegee Syphilis study." The Hastings Center Report 8(6): 21-29.
Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study (edited by Susan M. Reverby)
https://www.npr.org/sections/health-shots/2021/03/23/974059870/stop-blaming-tuskegee-critics-say-its-not-an-excuse-for-current-medical-racism

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#crashcourse #history #tuskegee

 (00:00) to (02:00)


Hi, I'm Clint Smith, and this is Crash Course: Black American History. I want you to imagine that you're in the shoes of this person. You're being offered free medical treatment by a team of doctors that work for the U.S. government, and, for context, there aren't really a lot of doctors that live near you, and these doctors from the government seem like people you can trust. Plus, it's free, so it seems like a really great opportunity to get healthcare when you might not otherwise have access to it.

But what if, when you went to see this team of doctors, people who you trusted, you were actually, without your knowledge, made to be part of an experiment, and what if, as part of that experiment, you had medication purposefully withheld from you, medication that could have saved your life, but because it was kept from you, it led to years-long debilitating illness and even the possibility of death for you, your friends, and your family?

I mean, it sounds like a horror movie, but it wasn't. This was very real, and it happened to very real people. Today, we're talking about the Tuskegee Syphilis Study. Let's start the show.

 NewSection (1:17)


First, a note on terminology: While the study is famously called the Tuskegee Syphilis Study or Experiment, some scholars disagree with that name. The people of Tuskegee, they believe, are not to blame for what happened, and some argue that the framing of it being named the Tuskegee Experiment implicitly places the blame and burden on that community rather than the government.

 Racism, discrimination, and prejudice have long been part of the way we practice medicine in the United States. (02:00) to (04:00) This isn't new. In face, it started in the earliest days of slavery. Enslaved Black Americans were rarely treated humanely by physicians in the antebellum South. Oftentimes, they were only examined when their ability to bear children or to work was in question, and many physicians experimented with new medical treatments on enslaved Black Americans without their consent.


Entire fields of study, like the field of gynecology, were built on the backs Black Americans being exploited and experimented on by the medical system. Many physicians and scientists of this era falsely believed, sometimes consciously and sometimes unconsciously, that Black people are biologically distinct or even inferior to white people.

For example, physicians and scientists in the United States incorrectly believed that syphilis, a contagious sexually transmitted disease that can also make the sexual partners of the infected individual and their children sick, affected those of European descent and African descent differently. What's more, many physicians and scientists thought that white Americans had more developed brains than Black Americans, and so, even though it was apparent that white Americans could develop syphilis, it was believed that they would suffer more neurological symptoms as the disease progressed.

These same physicians and scientists believed that Black Americans had less developed brains and were ruled by more basic organ function, so they posited that Black people would suffer more cardiovascular complications rather than neurological. The Tuskegee Syphilis Study gave researchers and physicians the opportunity to test these deeply troubling, medically dubious, and just plain old racist theories.

 So, in 1932, 600 African American men from Macon County, Alabama were recruited to participate in this experiment (04:00) to (06:00) conducted by the Public Health Service. 399 of the men were already diagnosed with syphilis and 201 were not. So the goal of the study, essentially, was to see what happens to Black people when you don't treat syphilis.


At the time the study started, penicillin wouldn't be a confirmed treatment for syphilis for over a decade, but there were still recommended treatments for the disease that were withheld, and penicillin would eventually be withheld, too. The word "unethical" doesn't even begin to cover how abhorrent this was.

The researchers did not test the alternative theory that white people had worse neurological symptoms than Black Americans or even have any white participants in the study at all. In addition to their theories, they based their justification for the study on another study done on all white subjects called the Oslo Study of Untreated Syphilis, but, when this study was published, it strongly advocated for treating the subject with syphilis and warned against doing otherwise. Regardless, the researchers continued with the study and chose the Tuskegee Institute as the place where they would base their project.

Many of the subjects were poor and uneducated sharecroppers who lived throughout rural Alabama. Many of them had never seen a doctor before, nor had they received any traditional medical care, but in this context, it might have felt to them like they were getting an extraordinary amount of treatment. The participants had to have a lot of blood tests, X-rays, and spinal taps, and a lot of tests to see how the disease impacted the population.

 For participating in the study, the men were offered medical care and burial insurance, and since Black Americans were hit really hard by the Great Depression, these types of incentives were extremely compelling. The Black unemployment rate in the South at that time was around 50%, and many of these men needed benefits for themselves and their families. (06:00) to (08:00) They were also given rides to and from the study, meals on the day that they were present, and free treatment for minor illnesses and ailments.


Even though the study was set up like a traditional research study with control groups and experimental groups, the subjects were never actually told that they were part of a study at all. While the men did agree to be examined and treated by the doctors, they weren't told that they were being experimented on.

Essentially, the researchers never received a really important thing called informed consent. Informed consent is when a researcher tells a research subject about the study they're participating in, the risk involved, and gives them the option of whether to participate or not. Informed consent is important because it acknowledges that the participant has the agency to make their own decision for their own body. What the men were told was that they were receiving treatment for something called "bad blood," a local term used to describe a number of different illnesses that resembled anemia and fatigue.

What's even worse is that even the broader Black community in rural Alabama had been misled about what the Public Health Service was doing. Many of these men were recruited by Black doctors, local pastors, teachers, and community leaders, demonstrating that many people thought that the men could benefit from joining. This is an important point, because the study members of the Tuskegee community were led to believe that this was a special government program that would be worthwhile for themselves and the whole community.

 A Black nurse named Eunice Rivers, who's a very controversial figure in this instant, helps demonstrate how complicated this all was. She was one of the first Black American women to work for the United States Public Health Service, and she helped recruit the 600 men into the study. Today, many scholars wrestle with whether or not she was complicit in what took place (08:00) to (10:00) or if she was a victim who had been misled herself.


Even after penicillin was discovered as a cure for the disease and became a standard of care in the 1940s, most of the men were not offered treatment by the study. The United States Public Health Service researchers withheld medication and critical information about it from their subjects. As a result, many of the men died, went blind, or experienced severe mental health issues due to the untreated syphilis ravaging their bodies, and many of their wives and children caught syphilis as well.

Eventually, a United States Public Health Service venereal disease investigator named Peter Buxtun started to ask questions about why this study was happening and whether it was ethical. He leaked the information to the press in 1972, and the resulting story prompted so much national outrage that the decades-long study was finally shut down.

In the summer of 1973, an attorney named Fred Gray and the NAACP filed a class action lawsuit on behalf of the individuals who participated in the study and their families. They ended up settling for more than $9 million for the study participants. The U.S. government also promised to give the surviving victims free medical service and burial services as a form of compensation through the Tuskegee Health Benefit Program, which provided medical care for the study's survivors, and in 1975, the wives, widows, and children of the participants were added to the program, as well.

 An important outgrowth of this infamous study is the National Research Act, which was signed into law in 1974. This act was a critical force in protecting the rights of study participants and shaping research ethics in the United States. It created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which identified basic principles (10:00) to (12:00) of research and ways to ensure that those principles were followed. The Commission's recommendations required researchers to always get informed consent from all of their study participants.


In 1996, the Tuskegee Syphilis Study Legacy Committee was organized to develop a strategy to address the emotional damages of the study, to hold the federal government accountable for more ethical research practices, and to persuade the federal government to publicly acknowledge their role in harming this community of Black Americans. And, in 1997, President Bill Clinton apologized publicly, stating, "It is not only in remembering that shameful past that we can make amends and repair our nation, but it is in remembering that past that we can build a better present and a better future. The United States government did something that was wrong--deeply, profoundly, morally wrong."

We also want to emphasize that this is recent history. This didn't happen in, like, the 1700s or 1800s. This study ended in 1972, and this experiment is also one of the reasons why some Black Americans are skeptical of doctors and researchers. Many still carry the memory of this deception deep in their bones.

Today, many research studies in the United States still have few, if any, Black Americans in their experiments. This is important to note, because non-diverse studies are not as effective and can lead to medical mistakes in the future. Part of this is tied to the fear that Black people have about how they might be treated in these studies, but another part of it is that sometimes researchers don't adequately reach out to these communities.

 And one more thing - while the Tuskegee Experiment absolutely does have repercussions that continue (12:00) to (13:48) to be felt today, it is not necessarily the all-encompassing cause for all inequality in the medical system. What it is is a microcosm of a larger historical trauma, and it is one of many factors, both historical and contemporary, that contribute to inequality in healthcare.


This is worth saying explicitly, because, by putting an outsize portion of the blame on a single historical event, people can put less blame on the current systems and structures that contribute to racism and discrimination in the medical community today. As USC sociologist Karen Lincoln told NPR in 2021, "If you say Tuskegee, then you don't have to acknowledge things like pharmacy deserts, things like poverty and unemployment. You can just say, 'That happened then, and there's nothing we can do about it.'"

Sometimes, racism in the medical and scientific community is not always as clear and blatant as it was in Tuskegee. Sometimes, it's more subtle and less easy to identify, but that doesn't mean it isn't there, and it's only by naming these things directly that we will be able to build a scientific and medical system that serves everyone in our country with justice and compassion. Thanks for watching; I'll see you next time.

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