The Problem With Race-Based Medicine

It’s an honor to address Physiatry 2022. As Dr. Gutierrez said, I'm going to be speaking about the problem with race-based medicine. I thought I'd start with one especially relevant example of the many, many extreme health inequities in the United States that disproportionately affect Black Americans. It comes from a study at University of Pennsylvania that was published last year, which looked at the ZIP codes where amputation of legs and feet is concentrated.1 The researchers found that in major cities like Philadelphia, Miami, Detroit, and Atlanta, the ZIP codes where there are high concentrations of amputations of lower limbs map onto the ZIP codes of Black neighborhoods. As the study reported, lower extremity amputation in a patient with peripheral artery disease is the culmination of years of failure by the US health care system.

Another example that has been in the news in recent years is the gross disparity in deaths from COVID. Early in the pandemic, it became obvious that Black Americans experienced the most infections and deaths from this virus compared with White Americans.2 When these inequities show up, as they often do, the question arises: why? Why is it that we see these persistent gaps in health outcomes along racial lines in the United States? The answer consistently falls into dueling hypotheses.3 On one hand, when the inequities in COVID deaths appeared, there was an immediate response, published in peer-reviewed journals, that there might be some innate genetic or other biological factor that increases the severity of the disease in African Americans. Some researchers speculated that specific genetic variants that differ between races might be the explanation. On the other hand, some researchers traced the disparities in COVID deaths not to some innate biological difference between races, but to structural racism.

As Dr Camara Jones, former president of the American Public Health Association and a longtime researcher in this field, said, “It's racism, not race, that's a risk factor for dying of COVID-19.”4 She pointed out that Black Americans are more likely to be exposed to the virus because of inequities in employment, with Black Americans more likely to be employed in jobs where they have greater exposure and less protection. Then, they are also more likely to die from COVID because structural racism harms their health. Black Americans are more likely to live in segregated neighborhoods that have less access to high-quality health care and are more vulnerable to all sorts of conditions that are bad for health: exposure to environmental toxins, lack of nutritious food and high-quality housing, and a slew of social factors that impair health.5 These are the same kinds of reasons why the University of Pennsylvania study found the coexistence of high rates of amputation and concentrated Black poverty.

Why is it then that, even though we can point to so many structural reasons why people of color in America are more exposed to inferior health determinants, we see the persistence of the idea that health inequities stem from innate racial differences? I want to talk about the origins of that idea, how it continues to be widespread, and why we need to end it. I think that to understand a very common notion that circulates in the popular imagination, in science, and in medical practice, it's important to investigate its very roots.

The idea that human beings are naturally divided into races stems from Christian theology at the beginning of European conquest and enslavement of Native peoples in Africa and the Americas.6 It was important for the Christian Church to create a justification for endorsing the enslavement of human beings. You might imagine that enslaving other human beings was a violation of Christian principles, especially if those people converted to Christianity. It was imperative to continue the slave trade for the Church to have an excuse for dispossessing, enslaving, and exterminating people even if they became Christians. The excuse Christian theologians invented was that God divided human beings into different races and placed them in a natural hierarchy with White people at the top and Africans at the bottom. According to this theology, God created White people in his image and ordained that they dominate other races of people.

At the turn of the 18th century, European scientists simply adopted this racist theology wholesale into Enlightenment thinking.6 The Enlightenment was supposed to be a very clear detachment from previous spiritual thinking. Enlightenment scientists developed the scientific method of investigation that was supposed to require evidence for explanations of how the world worked. Principles of liberty, equality, and tolerance were supposed to guide science as well as politics. But in one area, scientists didn’t depart from prior premodern thinking: the belief in race. It continued to be imperative for scientists to prop up an ideology that justified European dispossession, enslavement, and extermination of other human beings, along with a hierarchical system to govern people.7 So, Enlightenment thinkers replaced God with nature and adopted the idea that some natural force divided human beings into races and made White people superior. If you read the writings of Carl Linnaeus, Johann Blumenbach, Immanuel Kant, Voltaire, and other Enlightenment thinkers, you'll find various words for this natural force that they claimed created the races. Thomas Jefferson, for example, used this very convenient excuse to explain how he could found a nation on the inalienable rights to liberty, equality, and freedom yet support enslaving human beings, including his own children. He wrote that “the real distinctions nature has made” were “a powerful obstacle to the emancipation of these people.”8

The premodern concept of race that originated in theology and was transported into the Enlightenment continues in some scientific thinking today, except that scientists today specify that evolution is the force of nature claimed to have created human races.7 It's basically the same creationist notion that at some point in human history, some natural process divided all human beings into a handful of discrete groups that are so biologically distinct from each other they can be identified as separate races.

Doctors were extremely important to promoting the biological concept of race that was supposed to explain inequities between Black, Indigenous, and White people.9 They developed the racial concept of disease—the idea that people of different races have different diseases and experience common diseases differently. The racial concept of disease may seem very familiar because most medical schools still teach it in their curriculums, either explicitly or implicitly. One of the doctors who promoted this idea during the slavery era was Samuel Cartwright, who trained at University of Pennsylvania’s medical school, which was the first medical school in the nation and trained many of the elite doctors from the south.10 Dr Cartwright claimed that the “peculiar” diseases that Black people experienced were justifications for enslaving them. Indeed, he argued that enslaving Black people was good for their health. Cartwright’s main idea was that Black people naturally have lower lung capacity than White people. Because their lungs are weaker, he reasoned, they had to be forced to work by White enslavers to vitalize the blood to their brains so they could be healthy. He also diagnosed a mental disorder in Black people he called drapetomania—the disease that caused Black people to flee plantations. His remedy was to capture runaways and brutally punish them for their own good.

Another offshoot of the notion that slavery was good for Black people’s health was the practice of using Black people’s bodies for medical experimentation.11 Because Black people were considered chattel property of enslavers, they were denied autonomy over their bodies. J. Marion Sims performed gynecological experiments on enslaved women without anesthesia because there was no concern for their pain or their human rights.12 White doctors believed that Black people lacked the capacity either to consent or not to consent and that their bodies should be used to benefit White people.

The experimentation on Black Americans conducted over the course of US history reveals a profound paradox: on one hand, White researchers have justified the experimentation on grounds that Black people’s bodies are so innately different from White people’s bodies that they should be treated differently; but, on the other hand, Black people’s bodies are enough like White people's bodies that doctors can experiment on them for the benefit of producing therapies for White people. Henrietta Lacks was treated at a segregated colored clinic at Johns Hopkins and her cells taken without her consent because she was Black.13 Yet, her cells were used to create medical treatments for millions of people of all races all over the globe. At the same time, her own children didn’t have access to medical care they needed because they didn't have adequate health insurance. Similarly, the infamous syphilis experiment at Tuskegee, where hundreds of Black sharecroppers were denied treatment for syphilis, was justified based on the desire to discover innate differences in the course of syphilis in Black people's bodies.14,15 The rationale of treating people of color differently for their own good, even when there's obvious evidence that it's harmful, is a powerful way to obscure the harm racism inflicts.

When President Bill Clinton unveiled the first map of the human genome in 2000, he pointed out, along with Francis Collins and Craig Venter, who were the leaders of the public and private human genome projects, that it showed that human beings are not divided into genetically distinct races.7 President Clinton emphasized that all human beings, in genetic terms, are very much alike. This is true, but I think it’s even more important to note is that all the genetic variation among human beings is not grouped by race.16 Not only are there no clear-cut delineations within the vast amount of human genetic diversity, but also people within the groups that we call races are very genetically diverse. Africa is the most genetically diverse place on the planet; there’s more genetic variation in Africa than there is in the rest of the world combined.17 So, the notion that there's a genetically homogenous Black race makes absolutely no sense.

It seemed that the Human Genome Project would launch a radical rejection of the racial folklore that had lasted for 400 years, and scientists, biomedical researchers, and physicians would start to imagine how to do their work without relying on the biological concept of race. But, the opposite happened: after the mapping of the human genome, there was a resurgence of interest in how to use all the new genetic knowledge to look for genetic differences between races.7 Some scientists tried to explain racial health and other inequities in genetic terms and to find some substructure in the human species that mapped onto social concepts of race. The senior New York Times journalist Nicholas Wade published numerous articles claiming that there are three principal races, White, Black, and Asian, and that genetic differences between them explain health disparities.18

This disturbing turn to genetic concepts of race inspired me to write Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century. I found that scientists were circulating the idea that evolution created separate races in the human species, like the natural race concept that Enlightenment scientists adapted from Christian theology.7 Some scientists were postulating genetic explanations for racial inequities and developing race-specific biological remedies for these inequities.19 I argued in Fatal Invention that genetic explanations for racial disparities divert attention away from the social, political, and economic causes for continued racial inequities in the United States. Barack Obama was president at the time, and many people were claiming that his presidency proved that America had become a raceless society. Pointing to genetic explanations for persistent racial injustices, I argued, was a way of explaining how these injustices could exist in a society that had eliminated racism.

As I did my research, I was shocked to find not only genetic studies that were looking for innate differences between races but also medical practices based on deeply embedded beliefs about innate racial differences. Perhaps the clearest of these practices is race correction—the practice of automatically adjusting diagnostic tools according to a patient's race.20 Race correction is grounded in assumptions of innate racial differences that are so prevalent that doctors can make automatic and categorical judgments based solely on the patient's race. An article published the New England Journal of Medicine in 2020 lists numerous similar race adjustments made in a startling range of medical fields, including cardiology, nephrology, obstetrics, oncology, pulmonary medicine, and urology. When I started investigating race-based medicine, doctors told me that they only consider race as one among many factors to make nuanced diagnosis and treatment decisions. But, these adjustments aren’t nuanced at all; they are automatic and categorical.

One example that is very telling is the spirometer, a medical device that measures lung capacity. We can trace race correction in spirometry directly to Samuel Cartwright’s claim that Black people innately had lower lung capacity.10 This idea still circulates in medicine today, and there are some versions of the spirometer that allow the clinician to automatically adjust for the presumed lower lung capacity of Black patients. A 2021 study suggests that race correction in spirometry may underestimate chronic obstructive pulmonary disease severity in Black patients and cause doctors to miss their emphysema.21

Another example that has been getting a lot of attention recently is the eGFR, or the estimate for glomerular filtration rate, which is a very important indicator of kidney function.22 The eGFR is routinely adjusted upward to a healthier number if the patient is identified as Black or African American. I have to say, when I first saw the eGFR race correction, I could hardly believe my eyes. The adjustment was initially explained to me as accounting for the presumed greater muscle mass in Black people as a race, which is patently absurd. I understand that the muscle mass rationale has since been rejected, but the practice continues in many health systems around the country.

In a short piece published in Lancet, “Abolish race correction,” I argued that racial adjustments reflect a failure to understand the meaning of race and its connection to racism.23 When doctors automatically and categorically adjust a diagnostic reading based on a patient's race, they are assuming that race is a biological category. But you can't identify a patient's race based on any biological test; racial identifications are based on social definitions. Who is considered Black in America has changed over time and is different than in other nations. Many people identify as Black even though their ancestry is mostly European, Asian, or Native.

I also argued that race correction shows a failure to recognize the harms to Black patients from being denied care because of an adjusted diagnosis. For example, Black patients whose eGFR is adjusted upward to a healthier reading are less likely to be referred to specialized kidney care. A 2021 study calculated that, between 2015 and 2018, 31,000 more Black patients would have been eligible for kidney transplant evaluation and inclusion on a transplant waiting list if they were not subjected to the eGFR racial adjustment.24 It seemed counterintuitive to me that this would be helpful, especially given that Black people are more likely to experience end-stage kidney disease.25 Indeed, I wonder if the eGFR race correction has contributed to racial disparities in kidney disease morbidity and mortality. I’m also dismayed at the profession’s reluctance to change. It seems strange that physicians would continue to apply racial thinking that originated in the 1500s to their diagnoses and treatment decisions. Instead, they should be imagining a better way to practice medicine that doesn’t rely on false biological concepts of race.

In addition to race correction, which explicitly uses race to make medical decisions, there are diagnostic technologies that implicitly rely on racial differences. Oximetry became spotlighted during the COVID pandemic because people were using pulse oximeters to see their oxygen levels, which might be an indicator of COVID or its severity. A 2020 study pointed out that there was racial bias in pulse oximetry technology because the measurements were more accurate for White people.26 It turned out that the reason oximeters worked better for White people was because the devices were calibrated according to light skin. A letter to the editor criticized the suggestion that the oximeters discriminated against Black people: “The term ‘racial bias’ always refers to decisions that are influenced by a person’s race, Medical devices such as pulse oximeters are blind to color and cannot exhibit such bias.”27

The physician, however, failed to recognize a type of racial bias that doesn’t require explicit references to race. White people were used as the standard to determine how the oximeter worked. The device, therefore, advantaged people with lighter skin and disadvantaged people with darker skin. Although skin color is not divided by race—Black people, for example, come in many different shades—it is more likely that people who identify as White would have lighter skin. By treating White people as the standard, the oximeter creators produced inequitable outcomes, whether or not it was their intent to discriminate against Black people.

An illuminating 2016 study connected the longstanding and well-documented undertreatment of Black patients for pain to false beliefs about biological differences.28 The study discovered that “a substantial number of White laypeople and medical students and residents hold false beliefs about biological differences between blacks and Whites … [and] these beliefs predict racial bias in pain perception and treatment recommendation accuracy.” These false beliefs included the myths that Black people have thicker skin and less sensitive nerve endings than White people. The study’s findings suggest that many White students enter medical school believing stereotypes about biological differences between people of different races and medical school does little to disabuse them of these false ideas. In fact, medical education can reinforce these ideas when the students are taught to treat patients differently based on their race.29

In Fatal Invention, I sum up the misunderstanding about race and health: “Race isn't a biological category that naturally produces health disparities because of genetic differences. It's a political category that does have staggering biological consequences, but that's because of the social impact on people's health.”7 The idea that race is an innate distinction among human beings was invented to support racism. It’s not enough for physicians to say that they are not racists and can therefore import the biological concept of race in their practice. To be antiracist, you must scrutinize the ideas that undergird your research and practice. You must consider their origins and their impact. You must ask whether there is a better way to understand human unity and diversity and to incorporate it into medicine.

Physicians typically weren’t on an educational track to learn about structural racism and to think critically about the meaning of race. It is imperative, then, that they expand their knowledge about race and racism and then become more creative about addressing the structural inequities that cause the greatest harm to patients.30 This effort requires collaborating with other professionals and community members outside the clinic, as well as using their powerful voices to support society-wide antiracist policies. I'll end with the call to affirm our shared humanity by working to end the social inequities preserved by the political system of race.

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