How considering race sabotages care — and why change is imperative
When Megan Mahoney, MD, was in medical school, students were expected to identify their patients by age, race and gender — in that order.
Mahoney began to wonder: If she were a patient, how would they describe her, a biracial, light-brown-skinned woman with a white father and a Black mother? Might they see her anatomy differently or prescribe different courses of treatment than they would for a patient identified as white?
“I was just concerned that — and this is backed up by studies — as soon as I stated the patient’s race, there would be bias,” said Mahoney, a clinical professor of medicine and chief of staff at Stanford Health Care. “You can have the same case, the same words or presentation, and once you attach white or Black to it, you will see wildly different recommendations.”
Video: Stanford Health Care’s chief of staff, physician Megan Mahoney, talks about the role of race in health care at this link.
Q&A: In “Broken trust: A history of atrocities,” emergency physician Italo Brown, discusses Black medical mistrust at this link.
Racial classification is deeply embedded in medical practice — in clinical care guidelines, in research protocols and in medical training. Mahoney is among a growing number of medical professionals who argue that including race in health care decisions can lead to poorer treatment for nonwhite people.
They believe it’s time to take race out of health care and are urging medical centers across the United States to do so.
The American Medical Association gave impetus to the movement in November when it declared racism a public health threat and said race should not be used as a proxy for biology or genetics in patient care, research and education.
Rather, medical professionals and researchers should focus on the social factors — such as employment, education, housing, environment and racial trauma — that play a far greater role in determining health, the association said.
“When race is described as a risk factor, it’s more likely to be a proxy for influences of structural racism than genetics,” said Willarda Edwards, MD, a Baltimore internist and AMA board member who served as the chair of its Task Force on Health Equity.
She said the policy grew out of a discussion that began in 2003 when the Institute of Medicine published a report, Unequal Treatment, that detailed racial and ethnic disparities in the quality of health care.
But interest in the issue reached a peak last summer during the widespread protests demanding racial justice. The pandemic also laid bare gross inequities in health care, as people of color have suffered and died from coronavirus at disproportionately high rates, she noted.
In light of these pressing issues, Stanford Medicine in November established the Commission on Justice and Equity with a goal of dismantling systemic racism and discrimination within the community.
The commission is considering ways to make the culture of Stanford Medicine more diverse, equitable and inclusive and will recommend approaches to address health disparities that impact marginalized groups locally and nationwide.
In addition, the Stanford Medicine Health Equity Committee is gathering data on Stanford’s patient population, including information on race/ethnicity, sexual orientation/gender identity and socioeconomic status, to understand where disparities exist so it can ensure equitable access to care for all.
Embedded in the system
The use of race to inform clinical practice guidelines is pervasive.
In pulmonology, specialists measure lung capacity with a machine called a spirometer that is programmed to automatically apply a race-based “correction factor” to the reading, lowering a “normal” reading for a Black person by 10% to 15%. So a result that would be considered normal for a Black person could be considered unhealthy for a white person. Thus the Black patient may suffer a delay in care and receive inadequate treatment.
The practice is based on the faulty assumption that Black people have inferior lung function, according to Lundy Braun, PhD, a Brown University researcher whose 2014 book, Breathing Race into the Machine, traces the history of the device to the slavery era.
Former President Thomas Jefferson, a slave owner himself, epitomized the thinking with his observation that Black people had a “difference of structure in the pulmonary apparatus,” Braun notes.
Another example is the algorithm used to gauge kidney function, known as the estimated glomerular filtration rate, or eGFR. The algorithm for the blood test is adjusted based on several variables — age, race, gender, height and weight. For race, it calculates two results — one for Black patients, in which case the rate is adjusted upward, and one for non-Black patients.
This 50-year-old practice is based on the assumption that Black people have greater muscle mass, another myth of slavery times, Mahoney noted. The result is that Black patients could be classified as having less severe disease, disqualifying them for a transplant or leading them to postpone treatment until it’s too late to intervene.
“Even now, when I look at somebody’s kidney function, I use the race-correction kidney function because it’s … baked into how the data is presented to us,” Mahoney said.
Some academic medical centers have stopped using race as a factor in the eGFR measure, and use of the practice is under debate at Stanford Medicine.
Black patients are also significantly less likely to get a kidney transplant than whites because of the eGFR and because of bias in seeking out Black donors who could be a good match, studies show. Black patients face obstacles to transplant every step of the way.
They are less likely to be identified as a transplant candidate, to be referred for evaluation or to be put on a waitlist; and when they do receive a transplant, it’s likely to be a lower quality kidney, according to the American Society of Nephrology.
Other practices reflect racial bias in health care workers’ behavior toward Black patients. For instance, studies have documented that Black patients are less likely to be prescribed pain medication than white patients, and when they do get it, they are prescribed lower dosages than whites.
In a 2016 study published in the Proceedings of the National Academy of Science, researchers at the University of Virginia found that half of medical students and residents believed that Black and white people are biologically different, and that Black people are more tolerant of pain.
The assumption was perpetuated during the slavery era when it was believed that Black individuals have thicker skin or feel less pain than whites, the researchers said.
Many race-based medical beliefs that attribute disease risk to genetics or biology fail to consider the context and contributing factors of disease, such as social and environmental factors. Mahoney remembers learning in medical school that Pima Indians had a higher genetic risk of Type 2 diabetes.
But the Pimas in Mexico, who are genetically related, have relatively low levels of the disease. It is now known that the Pimas in the United States were more prone to diabetes because of the loss of their agrarian way of life, which forced them to subsist for years on high-fat, high-carbohydrate foods the U.S. military supplied them.
Genetic factors not at play in COVID
Since the beginning of the COVID-19 pandemic, some have speculated that genetics plays a role in why minorities represent a disproportionately high number of patients who have suffered and died as a result of the coronavirus.
Stanford population geneticist Carlos Bustamante, PhD, is involved in studies to understand how genetics influences immunity and response to COVID-19. Variation in the genes linked to COVID-19 are not specific to a racial or ethnic groups, but rather shared across groups, said Bustamante.
Furthermore, he pointed to the importance of social factors. “We think a lot of it has to do with who can shelter in place and who can’t shelter in place,” said Bustamante, inaugural chair of Stanford’s Department of Biomedical Data Science.
The modern concepts of race and racism originated in the 17th century, when European imperialists set out to build a power structure based on white dominance.
This hierarchy was later reinforced by the mass enslavement of Africans in the American colonies and the rise of social Darwinism, based on Charles Darwin’s theory of natural selection in which only the strongest and the fittest survive, Charles Hirschman, a social demographer at the University of Washington, wrote in a 2004 paper, The Origins and Demise of the Concept of Race.
Under the veneer of modern science, the races came to be defined by physical characteristics and capacities, Hirschman said. This belief system continued well into the 20th century. Though slavery was abolished after the Civil War, “racism had developed a life of its own,” Hirschman said.
It provided a convenient framework for white people to justify suppression of Black people. And racist ideologies like the eugenics movement, based on the idea of “breeding out” inferior traits, gave justification for the Nazis to murder millions of Jews and other people they considered “undesirables.”
After World War II, the ideology began to decline along with decolonization and the rise of social catalysts like the Civil Rights movement, the empowerment of minorities and the enactment of anti-discrimination laws.
Mapping the human genome
The mapping of the human genome in 2003 brought a conclusive end to pseudoscientific theories about race, proving that standard racial labels mean little when it comes to biology or genetics.
The genome project found that humans are 99.9% identical genetically and that more differences exist within historical racial categories than between them.
A year after the sequencing of the genome, Francis Collins, MD, PhD, leader of the international Human Genome Project and the director of the National Institutes of Health, said in a commentary that race and ethnicity are “poorly defined terms that serve as flawed surrogates for multiple environmental and genetic factors in disease causation, including ancestral geographic origins, socioeconomic status, education and access to health care.”
Bustamante agreed, saying that race is largely a “social concept, something that doesn’t belong to biologists.”
“I would say my favorite definition of race is that it is not the property of an individual,” he said. “It is the property of an interaction of an individual within a social context.”
A better, albeit imperfect, way to characterize populations is to look to our geographic family roots, he said, because groups of people with ancestors from specific locations often share genetic variations. Bustamante is a Venezuelan-born U.S. citizen with ancestors from Spain.
If he were forced to check a box about his racial identity on a driver’s license application, he would choose Hispanic. But that says little about his biology, as Hispanics are a highly diverse group who identify based on their place of origin — and their genetics reflect this.
The inherited blood condition sickle cell anemia, widely seen as a disease of Black people, is a good example of how misleading racial categorizations can lead to poor decision-making in clinical care. In the United States, the disease is certainly most prevalent in Black people — 1 in 12 Black people carry the gene for the disease. But it occurs in other groups as well — for example, 1 in 100 Latinos carry the gene.
If clinicians assume it’s a disease only of Black people, they could miss cases that occur among other patients.
Building equity into curriculum
Recognizing the need for change, Stanford’s School of Medicine has undertaken a comprehensive curriculum review designed to build more equity into medical training and practice. The process originated several years ago, when officials considered changes to address racial disparities in care.
But the recent social justice protests and pandemic-exposed inequities made the issue all the more urgent, said Daniel Bernstein, MD, the associate dean for curriculum and scholarship.
“We teach the biology of disease very, very well,” said Bernstein, the Alfred Woodley Salter and Mabel G. Salter Endowed Professor in Pediatrics. “But as the World Health Organization has noted, about half of the contributing factors of a patient’s health are not related to biology. It’s related to where people live, what their income is, how the color of their skin affects how they are treated by the medical community, and environmental factors. … If students are only learning about 50% of health, they are missing a huge opportunity.”
The AMA’s statement on race and racism validated what some had been saying for a long time, said Italo Brown, MD, an assistant professor of emergency medicine hired in the fall as the health equity and social justice curriculum lead.
“For many years, we’ve had to rely on one another to get momentum around challenging people to view health differently and not look at race, but rather to focus on underlying social determinants as the driver of outcomes,” said Brown.
When instructors talk about asthma, for instance, they need to include discussion about the historical practice of redlining, which relegated minorities to neighborhoods where there is a greater exposure to harmful environmental toxins, he said.
“When you teach asthma to medical students, you have to talk about why cases revolve around communities of color,” Brown said. “If you don’t share that information, you’re missing a very large piece of the puzzle.”
Bernstein said that when teaching first-year medical students about hypertension and its connection to cardiovascular disease, the traditional approach is to focus on the physiologic mechanisms of the disease.
“How much of it is traditionally physiologic versus how much is related to environmental and social stress, based on working three jobs and wondering whether you can put food on the table, or whether you can afford the medicines,” he said.
“Students should not look only to the blood pressure cuff. They need to look at patients holistically and what is a contributing factor in terms of the effects of systemic racism, their socioeconomic situation, and the presence or lack of support systems in the community.”
For Mahoney, that represents a wholesale change from her time in medical school decades ago, when few questioned a system where doctors categorized patients by race, to one in which trainees learn instead to ask patients how they would like to be identified.
“I think this moment represents the beginning of a paradigm shift — from the time we go through medical school and residency to the way in which we are seeing patients,” Mahoney said.
“Everything is starting to change with the growing diversity of our patient population. We are responding appropriately, but it will require a major transformation of the way in which medicine is being practiced.”