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In the 1700s and early 1800s scientists from Europe and the Americas were studying what they called "race science," a pseudoscientific field of study promoting the idea that humans could be divided into separate and unequal races. Biases stemming from race science have influenced medicine for hundreds of years, and still have deadly consequences today. In this episode of Tiny Matters, we tackle some of these consequences, where they get their roots, and what people like our guest â€� physician and science communicator Joel Bervell â€� are doing to raise awareness and incite change.Ìý

Transcript of this Episode

Joel Bervell: Do no harm is one of these tenets that we have in medicine, but it's impossible to do no harm if you don't understand the ways that our medical system has been complicit in actually creating harm by using race as a biological factor.

Sam Jones: That’s Joel Bervell, physician and science communicator. If you haven’t heard the term race-based medicine before, it refers to using a person's race as a factor in what medical diagnoses or treatments they receive. Race-based medicine is rooted in the pseudoscientific, racist belief that there are biological differences between white versus Black people for example.

Joel Bervell: I think my interest in racism in medicine really began with family. I think if you talk to any Black person in the United States, they've had some experience in medicine where healthcare hasn't worked for us in the way that's worked for other people.Ìý

Sam: Both of Joel’s parents were born in Ghana, immigrated to Canada, and ultimately settled in Seattle, Washington, where Joel grew up. His grandmother took care of him and his two siblings until Joel was in sixth grade and she went back to Ghana.Ìý

Joel Bervell: Literally within a year she passed away. When we found out why, we realized it was because she had been told to go to the hospital because she had malaria, but wasn't told that she was supposed to bring her own medical equipment and material, which was shocking. And so that led to delays in her own care, to getting care that she needed, to be here today. And for me, that was my first experience realizing that healthcare disparities, albeit at that point on a global level, actually existed across the world. Throughout the next few years, I had a lot of pain points where family members were experiencing the healthcare system.

Sam: Those incidents set Joel on a path to where he is today, where he’s not only treating patients but publicly sharing how biases stemming from race-based science have influenced medicine for hundreds of years, and still have deadly consequences today.

Welcome to Tiny Matters, a science podcast about the little things that have a big impact on our society, past and present. I’m Sam Jones and I’m joined by my co-host Deboki Chakravarti.

Deboki Chakravarti: Today on Tiny Matters, we’re going to be chatting with Joel who, to his over a million followers on social media, is best known as the 'Medical Mythbuster.â€� We’ll be getting into some of the underpinnings of race-based medicine that still influence our medical system today and the hopeful, though gradual, changes that people like Joel are pushing forward.Ìý

Joel told us that he began to dive into the legacy of race-based medicine during his sophomore year of college, when he was taking a class about media in medicine.Ìý

Joel Bervell: We talked about things like the Tuskegee syphilis experiment. I’d heard about it before, but didn't actually know the nitty gritty of it.

Deboki: The Tuskegee syphilis experiment took place in Tuskegee, Alabama, from 1932 to 1972. It was run by the United States Public Health Service and the Centers for Disease Control and Prevention to, quote, “observe the natural history of untreated syphilis.â€� Syphilis is a sexually transmitted infection or STI caused by a bacterium called Treponema pallidum. It starts with sores found where the bacteria enters the person’s body, usually in the genital areas. After a few weeks those sores change to a rash, and the person will have a sore throat and fever, as well as other possible symptoms like patchy hair loss, muscle aches and fatigue.Ìý

Sam: Those symptoms will clear up on their own, but without treatment the bacteria will remain latent, staying in the body sometimes for decades. And when it resurfaces it can have horrific consequences, including potentially fatal organ damage. The bacteria can also spread to the nervous system, causing vision problems, muscle pain and weakness, dementiaâ€� the list goes on. In the Tuskegee syphilis experiment, three-hundred ninety-nine men with latent syphilis were recruited. Two-hundred one men who did not have syphilis served as a control group.Ìý

Joel Bervell: The study was only conducted though in Black men, and none of them that were in this study were ever told that they had syphilis. Instead, they were told that they were being provided with free healthcare from the federal government and that they had, quote, bad blood. And so what happened was doctors would visit this area, Macon County, Alabama, which was chosen because it had a high amount of people in that area that had syphilis. And doctors would go and make sure that individuals actually did not get treatment for syphilis.Ìý

Sam: But early on in the study, a cure for syphilis was discovered. It was penicillin, an antibiotic first used in 1941. By 1943, it was available in large supply to treat the Allied Armed Forces in World War II. So nearly 30 years before the Tuskegee syphilis study would end, there was a cure for the disease.Ìý

Deboki: But instead of telling men in the study that they had syphilis and that there was a cure available, the subjects were kept in the dark. The study continued.

Joel Bervell: And so even beyond this, I think for me, the craziest thing about the Tuskegee experiments was that they weren't hidden. I think oftentimes we think, oh, this must have been, no one must've known about this. It was all kind of in the shroud of darkness. But from the very beginning of this study, they published health reports in public journals and they presented all the work at conferences. The New England Journal of Medicine, one of the largest journals in the world, consistently published about this observational study. And they published occasional reports as well, including findings that showed that the men with syphilis were dying at a faster rate than those that were uninfected. But it's doubtful if any of these men or their wives or their girlfriends or their kids had any idea what was happening.Ìý

Deboki: Even though the Tuskegee experiments weren’t hidden, they weren’t widely known either. But on July 25, 1972 � forty years after the experiments started � a young reporter at the Associated Press named Jean Heller reported what had been going on.

Joel Bervell: So after that was published, there was a former community leader, his name is Charlie Pollard. He went to one of the law offices in Tuskegee and went to Fred Gray, who was a civil rights leader, and a legend by that point whose clients had included Martin Luther King and Rosa Parks. And he went to the office and asked if he'd been reading the newspaper about the men that were involved in the syphilis study.

Deboki: As it turned out, Fred Gray had been part of the study, in the control group that did not have syphilis.Ìý

Joel Bervell: And his visit to Gray then led to a lawsuit, which then led to a multimillion dollar settlement, which reached the government in 1975.Ìý

So in all, about 623 men were involved in this study, but as I mentioned, many of their wives actually ended up contracting syphilis because they were never told, so many of their kids had it as well. And I think one of the other egregious things about it is they were paid and payments to men in their areas differed based on whether the men were infected or whether they were in a control group. Living participants who had syphilis got $37,500, and then heirs of the deceased members of the control group received $5,000. And so the woman and children who were infected by syphilis got lifetime medical and health benefits. But for decades, the study's been widely blamed for increasing that distrust among United States Black Americans toward the medical community, especially when it comes to clinical trials and other tests.Ìý

Deboki: Tuskegee is one of so many studies that has led to distrust of the medical system in Black communities, and there are specific scientists and doctors who have added to it. One example is J. Marion Sims, a 19th century physician who is often referred to as the “Father of Modern Gynecology.� His focus was developing treatments for gynecological conditions, particularly something called a vesicovaginal fistula, which is an opening between the bladder and the vagina. For his Black patients, who were enslaved women and children, he did not use anesthesia in surgeries. For his white patients, he did.

Joel Bervell: And Dr. Sims is known to have held racist notions against Black people, especially Black women, believing that they didn't feel pain, which is a racist belief that still today permeates throughout medicine unfortunately.Ìý

Sam: In a study done at the University of Virginia in 2016, 222 white medical students and residents were surveyed on their beliefs about pain, comparing Black and white patients.Ìý

Joel Bervell: So they asked things like, do Black people have less nerve endings than other races? Do Black people feel less pain? Do Black people have thicker skin? And 50% of the medical students and residents that were surveyed endorsed at least one false belief about biological differences between Black and non-Black patients. Those that were likely to endorse at least one false belief were also less likely to provide adequate pain management for Black patients, showing that these beliefs aren't just beliefs, but actually permeate beyond that into the medical care that people receive as well.Ìý

Sam: So you may be wondering: Where did this belief come from?

Joel Bervell: To understand that we really have to stretch back to the scientists who actually first defined race. And that goes all the way back to the 1700s and early 1800s with scientists from Europe and the Americas who were studying, quote, race science. And that promoted the idea that humans could be divided into separate and unequal races. So the American and French Revolution specifically promoted the idea that all people were equal, but race scientists tried to justify slavery in the United States and Europe despite that contradiction. And to do that, they had to really say that there were differences between races.Ìý

Sam: There are four scientists in particular that Joel really points to with this: Carolus Linnaeus, Johann Blumenbach, Samuel Morton, and Samuel Cartwright.Ìý

Joel Bervell: So Carolus Linnaeus, he was an 18th century Swedish naturalist, and he was among the first scientists to sort and categorize human beings. That became the foundation for many countries, including the United States, and how we built racial policies around everything. Linnaeus divided homo sapiens into four basic, what he called varieties.

Sam: Those “varietiesâ€� were Homo sapiens europaeus, Homo sapiens americanus, Homo sapiens asiaticus, and Homo sapiens africanus. And they were categorized based on the four humours, an ancient theory put forth in the fifth century BCE, that a person’s health and personality, including temperament, are influenced by four bodily fluids: blood, phlegm, yellow bile, and black bile. It was still popular leading into the 19th century.Ìý

Joel Bervell: So for the American variety of individuals, Linnaeus said that these individuals were red, choleric and upright. For the European, he said they were white, sanguine, and muscular. For the Asian variety, he said they were pale, yellow, melancholic and stiff. And then for African, or africanus, he said they were black, phlegmatic, and relaxed or lazy. And so many of these stereotypes that you may hear from each of these groups, from the European to the Asian to the African, to the American, American Indian group, are stereotypes that still exist today. And he really laid the groundwork for them. But what was interesting is Linnaeus didn't create a hierarchy out of these. He just said, this is how it is. It was when Blumenbach came along that he added onto Linnaeus� taxonomy and coined the term Caucasian in 1795. And that's when he actually said, there's actually a hierarchy with Caucasian at the top and the other races somewhere down below.

Sam: American anthropologist Samuel Morton came along in the mid-1800s and theorized that intelligence was linked to brain size.Ìý

Joel Bervell: And so his work was to measure a large number of skulls from across the world and to see which race was the most intelligent versus the most non-intelligent based on skull sizes. And his assertion was that people that were Caucasian were the smartest, had the largest skull sizes, and that every other race fell somewhere below that.Ìý

The last scientist I'll mention is Samuel Cartwright to show how medicine has been complicit in this and how medical conditions were actually used as a way to perpetuate these false beliefs. Samuel Cartwright came up with this disease called drapetomania, and it was considered a mental illness in 1851.

Deboki: Drapetomania was also called “runaway slave disease,� which Cartwright put forth as a psychological disorder that caused enslaved people to run away from their captors. The treatment for it? Whipping.

Joel Bervell: And so each of these scientists in some ways played into the belief today that there are biological differences between races, and I always have to jump all the way forward now â€� so we’re talking about the 1700s, 1800s â€� so now jumping forward to literally 2000s when the Human Genome Project was done and showed that you can't look at someone's genetic code and figure out what race they are, you can figure out their ancestry, you can figure out their ethnicity, but you can't figure out race because race changes over time based on the geography of where you're from, based on what we defined at the time. Sometimes it's skin color, sometimes it's hair color, eye color, different physical features. And many of the listeners may have probably heard of the phrase, “race is a social construct.â€� That's what it means to say that race is a social construct, meaning that there is no genetic or biological basis for race, but it’s built off of these false beliefs that we used to categorize people.Ìý

So when it comes to medical education, I’ve just talked about how race is a social construct. Yet in medicine, when we talk about it, we don't treat it that way. We treat it as if it still has biological connotations, whether it's with something like, for example, sickle cell disease. Whenever anyone's trying to argue against me, they say, oh, but what about sickle cell disease?Ìý

Deboki: Sickle cell disease is a blood disorder caused by a mutation in the hemoglobin subunit beta gene, which codes for the beta-globin protein within hemoglobin. With this mutation, a person’s red blood cells take the form of a crescent or sickle shape, instead of a typical disc, making it harder for them to carry oxygen. Sickle cell is protective against diseases like malaria, which is spread by parasites that use red blood cells to replicate. Having sickle-shaped red blood cells makes it harder for the parasites to do so.

Joel Bervell: And so anywhere where malaria is likely to be endemic means that your family, your ancestry, is more likely to have had an allele for sickle cell. That then was passed down, and that's of course in areas in Africa, but way more than that.

It's in areas in the Middle East as well, in Central America, where there are just as high of numbers of people who have sickle cell disease as there are in parts of the continent of Africa. Yet unfortunately, in medical school, when I learned it, we still really talked about it as a quote, Black disease, or even in traditional media, we think about it as a Black disease.

Deboki: Joel and others argue that patients should really be evaluated based on ancestry. For example, he says, in a medical setting a patient may be referred to as Black or African-American�

Joel Bervell: But we don't specify where that individual's from. We don't say that they're West African or that they're South African or they're from East Africa, even though we know that genetically all these groups are so distinct and that the diseases that affect one group isn't universal, that there's some specific ancestral groups within a racial category where things are more likely to happen. Yet we do do it for other groups. For example, we'll talk about Ashkenazi Jews and how they may be more likely to get Tay-Sachs disease and things like that.

That's an ethnic group, not a racial group. And so we do it for some groups, but not others. But the more we're able to actually get more fine tuned, the less we apply broad strokes in medicine to specific groups of people.

Deboki: Unfortunately, race still continues to be used as a biological factor when providing patient care. One example of this is with something called the glomerular filtration rate or GFR equation, which measures how well a bundle of small blood vessels in your kidneys called the glomerulus are filtering blood.Ìý

Joel Bervell: If you have a high GFR number, that means your kidneys are filtering out toxins really well. If you have a low GFR number, that means your kidneys aren't working very well. For decades, there's been a racial correction for Black people, and only for Black people, of the GFR equation, that adds a multiplier of, I think it was about 1.2, essentially saying that anyone that's Black has better kidney functioning than any other race.

Sam with Joel Bervell: Why is that?

Joel Bervell: Exactly � that's the question: Why is that? But when you go back to the research that kind of established this equation, in the late 1990s, the research had looked at a small population of Black patients and had seen that they had a higher level of this muscle breakdown protein called creatinine. Creatinine is this muscle breakdown protein, but we also use it in the GFR equation to understand how well kidneys can filter out creatinine. And so essentially what happened was they found high levels of this muscle breakdown protein, and they actually wanted to be equitable. Ironically enough, they said, we don't want to over-diagnose Black patients with chronic kidney disease, and so let's add this multiplier to make it look like all Black patients have better kidney functioning. But when you look at the reasoning why they thought that Black patients had better creatinine levels, they didn't look at social determinants of health or anything like that.

They said it was because all Black patients had higher muscle mass, going back all the way to the 1700s and 1800s and these false beliefs that we've just talked about and how to get ingrained into the system and passed down. And so this false belief that all Black people, no matter what your ancestral background is, have higher muscle mass, then found its way into this equation that then led to less Black people being able to be diagnosed with chronic kidney disease.Ìý

Sam: But the impact went beyond Black patients being less likely to be diagnosed with chronic kidney disease. Joel told us they were also less likely to have access to kidney transplants. That's because in order to be put on a kidney transplant list, your GFR level needs to go below a certain threshold.

Joel Bervell: And it wasn't until 2021 that a new equation that no longer included race was created. And this new equation used creatinine still, but in conjunction with this protein called cystatin C it was much more accurate, so it didn't need to use race anymore. Fast forward to 2023, and the Organ Procurement and Transplantation Network essentially said any person that has had this equation used against them will be eligible to potentially have their wait times looked at and adjusted. And I actually had a woman reach out to me, her name is Anise, on Instagram, and she told me that she'd been following me for years, had been looking at all my content, and that anytime I posted about chronic kidney disease, she would take that video and she would send it to her sister who has chronic kidney disease.

Sam: Anise’s sister saw Joel’s video about potentially being moved on the kidney transplant waitlist, showed the video to her doctor and ultimately got moved up by four years, which is incredible. It all stemmed from Joel’s video. This is why science communication is important, people!Ìý

Deboki: Another measurement that Joel came across that factors in race is the spirometry test, which measures how well your lungs are working. And, like with the GFR equation, a race-based correction factor was used.

Joel Bervell: For decades, once again, there's been a racial correction for spirometry that assumes if you're Black or Asian, you have lower lung functioning than any other race. And once again, it connects to this long history of false beliefs about race, this time all the way to Thomas Jefferson, where Thomas Jefferson actually had written in notes on the state of Virginia and expressly said that the difference in the pulmonary apparatus made Black people suited for plantation labor. And that actually being able to revitalize the lungs in the field is a way that a slave was able to make their lungs better. And so then Samuel Cartwright�

Sam with Joel Bervell: Sorry. So Jefferson was essentially saying slavery is good for people?

Joel Bervell: Jefferson was saying that slavery was good for people because it helps revitalize the lungs. It helps Black people who have low lung functioning be able to get blood flow through there so they can actually breathe, essentially, which is insane.

But Samuel Cartwright â€� so I mentioned him before as one of the doctors that had talked about drapetomania â€� built on Jefferson's claims and used the spirometer to essentially claim that Black people had lower lung functioning capacity than white people. And while there have been studies that have been done, there was a study that was done that looked at it, but didn't look at socioeconomic status or living conditions. It just used race as this kind of catchall, even though if you looked at someone's insurance status that was as equally as likely to lead to disparities within lung functioning as was race. And so instead of actually looking at the social determinants of health, the fact that these slaves were actually on a plantation working, and that's why their lung functioning was lower, they were using all these things as a way to justify slavery.Ìý

So the influences that continue from not just today, but from a long time ago, are woven throughout history in a way that has been built into the system. And that's why I often look at systemic racism as opposed to individual racism, because individual racism, this implicit bias is built off these beliefs that came before, but it's once it becomes encoded in our medical education, in our devices, in our equations, that's where it actually begins to have massive effects on populations.

Deboki: One of the devices that Joel points to is something called the pulse oximeter, which was created without being tested in a diverse population of people. A pulse oximeter is a small device, usually clipped onto a patient’s fingertip, that measures their blood oxygen saturation level â€� how much oxygen is being carried in their red blood cells. The way it does this is pretty cool. So hemoglobin in your red blood cells exists in two forms â€� oxygenated and deoxygenated. A pulse oximeter uses two wavelengths of light â€� one red, one infrared â€� that are absorbed differently by those two forms of hemoglobin. Oxygenated hemoglobin allows more red light to pass through, whereas deoxygenated hemoglobin allows more infrared light to pass through.Ìý

Pulse oximeters have a processor that takes this data and then spits out an oxygen saturation percentage. Anything below 90% is considered low and below 86% is when brain health starts being threatened.Ìý

Joel Bervell: And I remember in 2020, I had just finished up my first year of medical school and was starting my second year. And I was sitting at home in December and was scrolling through Instagram on my stories and saw this New England Journal of Medicine article that someone I followed had shared that said that pulse oximeters don't work well in darker skin tones.Ìý

And I just finished my pulmonology and my cardiology unit, but I didn't remember ever hearing about that. I was like that, there's no way this is true. But I read the New England Journal of Medicine article, and in it stated that these pulse oximeters are three times as likely to lead to inaccurate overestimated oxygen saturation levels in patients with darker skin tones. And that had clinical significance, especially during COVID, because patients would be taking these devices home, using them to test their oxygen saturation and to see if they're what's called hypoxemic, having low oxygen levels. And that helps doctors understand if we needed to give this patient additional oxygen or if we could send them home.

Deboki: Seems like really important information for doctors and patients to be aware of. But at that point there was no warning on these devices and the FDA hadn’t added any info about them to their website. It was something you would have to essentially stumble upon to learn.Ìý

Joel Bervell: And so at the time, I did what any Gen Z slash millennial, I call myself a Zillennial, would do, and I took to TikTok to actually create a 60 second video about pulse oximeters and how this difference could be life-threatening. Within 24 hours, my video had over half a million views, and there were doctors and nurses saying, I use this device every single day and I never knew this was something that could happen for my Black patients or my patients with darker skin. And then at the same time, there were patients saying, I wonder if this is what happened to me.Ìý

Sam: Fast forward to now and some changes have been made. The FDA has recognized the inaccuracy of the pulse oximeter for patients with darker skin. But still, there is no pulse oximeter on the market that claims to work well on all skin tones.Ìý

Joel Bervell: I think it goes to show how it's not necessarily all about how we talk about race, but even understanding that not having inclusive populations when we're creating devices, looking at actual conditions, can actually lead to differences as well.Ìý

Sam: So it should be pretty obvious by now that, although there is hope, our healthcare system has a long way to go to rid itself of these biases and disparities that have existed for centuries at this point.Ìý

Joel Bervell: But really, in order to do that, we need to be able to take a step back, recognize our own implicit biases, recognize how those have built a larger system of systemic biases, and be able to actively and every day say, I'm going to learn more, do more, and actually step back and listen more so I can figure out how I can be a part of the solution and not the problem.

Sam: Let's do our tiny show and tell.

Deboki: Cool. So Sam, I have a quick little tiny show and tell for you today, which is not technically related to today's, because obviously today we're talking about racism in medicine, but it is related in that we're still talking a little bit about doctors and how they perceive things. But this is about optical illusions, and it's a study that I thought was really interesting. And basically the scientists who are running it, they wanted to see how people who work in different jobs, like whether or not there are particular jobs that are better at seeing through optical illusions. And they especially wanted to see how well radiologists do because radiologists, their whole job is they have to look at scans�

Sam: Right.

Deboki: And they have to quickly find things that are wrong. They have to use their eyes and they just have to make sense of this information. And in particular, they have to do this while ignoring other things that are going around like whatever it is that they're looking at. So they made radiologists look at this particular optical illusion where, you might've seen something like it, where it's like there are two circles in the image and then surrounding the circles are other circles. And depending on how big those other circles are, they can make those two circles in the middle look different sized compared to each other. And so it could also make a bigger circle look smaller than the other one. There's all this kind of neat stuff around that. Optical illusions are, by their nature, hard to explain in words. But yeah, so basically what they found is that radiologists, they could be fooled by this illusion, but in general they did a lot better than non-radiologists at seeing through this optical illusion and kind of seeing what was going on. So I just thought that was really cool.

Sam: That's so interesting. Oh, that's really neat. And again, we always link to the article so then people can check that optical illusion out themselves.

Deboki: Yep. And you can see how you would do. Are you better than a radiologist?

Sam: I know I'll be 1,000 times worse. Okay, so I have a, I'm going to say I have a cute and smart tiny show and tell for you today.

Deboki: Oh.

Sam: Researchers have discovered a Jacobin hummingbird chick that mimics a poisonous caterpillar to avoid being eaten.

Deboki: Oh!

Sam: Yeah. So this is a hummingbird that's found in Panama's rainforest. It might be found in other rainforests as well, but the one they were looking at was in Panama and at one day old, it's covered in brown fuzz and it's smaller than a pinky finger. And when the researchers approached it, it would start twitching and shaking its head. And then they were observing it and they realized that also when a predatory wasp approached it, it would do the same thing. And I guess that in this region of Panama, there are these toxic, sometimes deadly caterpillars that have similar looking brown hairs, and when they feel threatened, they will shake their heads.

And so this is one case, I want to be clear, this is one case, a fun observation, but it could be a really cool case of mimicry in these hummingbirds, the Jacobin hummingbird. I will share a link where you can actually see this hummingbird chick, this baby hummingbird.

Deboki: Yeah.

Sam: But I just thought that was really interesting. And it does, it's kind of weird and you want to think it's cute, but it kind of does look like a creepy caterpillar thing, so it's not so cute.

Deboki: That must be very trippy to be like, actually, I was a bird all along. Well, thank you Sam, and thanks for tuning in to this week’s episode of Tiny Matters, a podcast brought to you by the American Chemical Öйú365betÖÐÎĹÙÍø and produced by Multitude. This week’s script was written by Sam, who is also our executive producer, and edited by me and by Michael David. It was fact-checked by Michelle Boucher. Our audio editor was Jeremy Barr. The Tiny Matters theme and episode sound design is by Michael Simonelli and the Charts & Leisure team.

Sam: Thanks so much to Joel Bervell for joining us. Go rate and review us wherever you listen, we super duper appreciate it. And we’ll see you next time.

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