Yale experts chart course for move away from race-based medicine
Medical and public health research, practice and education regularly utilize race as a biologically relevant variable, operating upon historical systems of oppression.
Eric Wang, Senior Photographer
Researchers, epidemiologists and clinicians have begun to reconcile the history of systemic racism and its inherent links to the modern American medical system of research, training and practice — providing insight into what equitable changes can be made to these practices.
In 2020, Yale and affiliate healthcare practitioners and researchers called for a shift in medical and public health research, training and practice from a race-based to a race-conscious approach in a Lancet editorial. The editorial sparked the Office of Health Equity at Yale School of Medicine to review how race is utilized in their medical education with the goal of creating a more equitable training curriculum. Still to this day, healthcare researchers are debating how race should be approached or if it should even be used in epidemiological and genetic research, which influences evidence-based clinical training and practice.
“Race in medical care takes the form of shaping the actual clinical tools, and the way that we think about human physiology … that are kind of more insidious and not consciously recognized, from drug dosing to assessments of risk,” Jessica Cerdeña GRD ’22 MED ’23, one of the authors of this article, said. “It also shapes the way that patients are cared for, and clinical spaces, clinics, hospitals and so on. So I don’t view medicine as being really exceptional. It’s really kind of the norm in terms of how racism shapes our society.”
Cerdeña believes that the historical implications of the racialization of humans continues to permeate healthcare in the sense that race is still treated as a biologically relevant variable.
At Yale, professor of African American Studies and history of science, medicine and public health Carolyn Roberts is teaching the popular undergraduate course “Sickness and Health in African American History,” which details the historical linkages between slavery and the racialization of human classification in early scientific history with current medical practice and research.
According to Cerdeña and Roberts, medicine has been no exception to the racism which structures American society: there are many examples from the early origins of racism in medical education such as the classification of humans based on racial hierarchies, medical students sourcing Black bodies for anatomy labs and the exploitation of and experimentation on enslaved people.
Cerdeña and Roberts referenced the ways in which race correction is still used today in risk calculators such as eGFR, which determines kidney function, cardiovascular disease risk factors, and spirometers, which determine pulmonary function. These tools all utilize an input of whether the patient is Black in their calculation of risk.
For example, Black people are assigned a higher level of kidney function based on the eGFR calculation, due to the idea that they have more muscle mass, according to Roberts.
“One of the things that troubles me the most about what I call this ‘race habit,’ the habit to just go to race … as an easy rationale for human difference is because you miss the actual conditions in which people are living and dying,” Roberts said. “Rather than imagining there’s some difference in pulmonary function, why don’t we ask the patient like, ‘Where do you live?’ ‘What kind of air are you breathing?’ ‘Are you drinking clean water?’ A lot of the environmental toxins are in Black and Brown communities. … That is actually the most important part of care. The holistic view of the human person.”
Cerdeña echoed the sentiments that the current racialization of medicine fails to view patients as human beings, and that physicians are taught to analyze disease and diagnosis rather than to analyze what factors in the patient’s life could be reinforcing health and illness.
She noted the real dangers of propagating racism within medicine and healthcare, as these patient-provider interactions represent “moments of extreme vulnerability” in which patients seek healing.
“When we care for people who are racialized differently in our society, we treat them differently,” Cerdeña said. “That’s where medicine really kind of sets itself apart from the other spaces in which racism occurs, because we’re supposed to be a symbol of trust. Patients share all of their lives and their secrets with us. And when we go back on our word, by … reducing people who are complex, social, beautiful beings to seeing somebody as rudimentary as a skin tone, or the width of their nose, or their height, or their lip thickness, the shape of their face bones, that is a really kind of cruel form of treating someone.”
Additionally, Cerdeña and her colleague Emanuella Asabor MED ’24 GRD ’23 recently found that in UpToDate — a widely used resource physicians use in real-time to make clinical decisions for their patients — 93 percent of the time that Black or African American race was mentioned in the literature, it was done so in a way implying that race was biological.
Asabor emphasized that during clinical rotations, she observed physicians heavily rely upon this tool which consistently demonstrated “inappropriate usage” of Black race.
“Despite a wealth of research that has really challenged the utility of thinking about race in a biological way, we as a medical community are still having trouble understanding that race has limited utility as a proxy for biological difference,” Asabor said. “Often as a medical community we say that race is socially constructed, but I am not sure that the medical literature and the way that people think about race in practice necessarily reflects that statement.”
Lou Hart, assistant professor of clinical pediatrics and medical director of health equity in the Yale New Haven Health System, emphasized that medical school curriculum teaching that “certain outcomes are associated with certain racial groups” without explaining the additional factors leading to these disparities is a modern example of scientific racism.
Hussein Mohsen GRD ’22 — who earned his PhD in history of science, medicine and public health and computational biology and bioinformatics — noted that race has been rejected as a genetically relevant variable in genetics research.
“There is a strongly growing consensus that on a genetic level, race categories are neither valid nor accurate,” Mohsen said. “Biologicizing race is a legacy of early modern times, and it was a phenomenon that was muddled with confused results, collusion with colonial violence and scientific limitations.”
Both Mohsen and Cerdeña pointed out that the relationship between science and sociopolitical systems has always been “bi-directional,” and that both have historically fueled racial hierarchies by building off one another. They both emphasized the harmful ways that inappropriate data collection and the politics of data collection itself impact research into racial disparities or genetic variation.
Cerdeña pointed out that historically, doctors were responsible for propagating essentialist ideas that one could infer intelligence or someone’s likely behaviors from their skin color or skull size.
“Science, like any field, is in a bi-directional relationship with, and is embedded in, society,” Mohsen wrote. “There is an interaction between political and social transformations, and the produced scientific knowledge at a point in time and space. And that’s not to say that there are no patterns that could be observed in, say, nature, or that you can not measure or replicate results. Yet, there are always limitations in data, and there are politics determining what data are collected, and as importantly, what data are not collected; how results are interpreted; how hypotheses are generated; and which hypotheses are funded.”
Race as a variable in research
Many argue that racial data must be collected in epidemiological research in order to investigate disparities in care and determine genetic variation within human populations.
Within the field of genetics research, scientists have called for the need to use race as a variable with intention, or trace genetic variants as a function of ancestry as opposed to race which is a social construction.
“There has been a shift to using continental ancestry in genetic research instead of race,” Mohsen said. “But continental ancestry categories do have their limitations, and have inaccurately been conflated with race categories.”
Roberts emphasized that race as a social rather than biological category is “very important” and can drastically influence outcomes, as this influences our governance structures and political systems. She noted that framing race through this lens influences how researchers understand the different opportunities and privileges certain groups have over others.
“We need to just continually reiterate race as a social category as a social determinant of people’s health, and begin to somehow create language in the studies that are done to allow that to be blatantly clear, because we lean back on racist biology because it’s our habit,” Roberts said.
However, according to Asabor and Cerdeña, issues arise when this data is not used with intentionality and when correct hypotheses are not being formulated — which instead imply causation rather than correlation between race and health outcomes.
Asabor strongly believes race must be studied “explicitly” and that because the experience of race is “not reducible to oppression,” it is critical to collect data on race when trying to understand racial disparities. She emphasized that simply collecting data on income, for example, would miss the unique ways in which racism manifests itself in the United States when investigating health inequities.
She noted that while race is “certainly enacted through wealth and class,” this is not an exclusive interaction, as “oppression and marginalization” is a shared experience related to being Black in America.
For example, Asabor said, investigating maternal mortality disparities by only using income or education data would miss the fact that controlling for these factors, Black mothers still experience disparities, and that the “experience of being a Black woman” in the U.S. healthcare system is still shaped by “medical racism.”
However, Asabor acknowledged a prevalent issue in the field of epidemiology and public health research related to conflating race with social determinants of health. Asabor asserted that this phrase is too broad to be utilized in research when trying to determine targets for health interventions.
“To start, I think that social determinants of health as a phrase … is too broad and it lacks precision,” Asabor said. “Sometimes when we say social determinants of health, it becomes this catch-all phrase … one person will read social determinants of health and there are things that will pop into their mind and another person could … have a completely different set of issues that they are really thinking about when they see that phrase.”
Instead of focusing attention on attempting to understand the role “race” plays in creating disparities, we must rather ask questions about the role that “racism” plays in creating those disparities, Asabor said.
Abasor speculated that as people formulate studies to investigate racial disparities, they may be “careless” with the way they handle race as a variable in a way that they normally would not with other variables.
“If we shift the focus of attention from ‘How do people differ in their disease experiences on the basis of race?’ and instead we ask, ‘How do people differ in their illness experience on the basis of their relationship to structural marginalization on the basis of their race?’ I think we start to ask a much more precise question,” Asabor said.
According to Asabor and Cerdeña, researchers utilizing racial data “responsibly” must formulate hypotheses, questions and conceptual frameworks with intentionality. Asabor explained that in linking disease outcome disparities to specific groups of people, one must ask appropriate questions when utilizing race in quantitative research.
First, researchers must define what race means and what role it plays in the study’s context, as well as understand why it is necessary to utilize it as a variable in the study, in the case there is not a “better proxy” variable to answer the proposed question.
According to Asabor, the “scientific rigor” that approaching race in studies requires is lacking in comparison to the way other variables are approached in biomedicine.
She emphasized that many people conducting research on health equity and racial disparities are “comfortable designing studies without leaning on the rich literature on racism” and literature that may exist outside of public health. She noted that often, epidemiologists may intentionally avoid collaborating with health equity scholars, as they “do not recognize it as a space of expertise.”
Asabor advocates for scientists to recognize community partners’ expertise and form partnerships to shape a more just and inclusive healthcare system.
Hart leads data-driven efforts within YNHHS to intentionally collect data that can better inform leaders in establishing that racial disparities exist and understanding why they exist in order to address them.
While Hart understands that in statistical analysis, other covariates can be controlled to show that race doesn’t play a role in the independent variable and outcome, real life is different. “Social drivers of health” like access to housing and neighborhood safety cannot be “control[led] away” in real life, he said, emphasizing that not enough physicians implement this knowledge.
“Since race in our country has been so inextricably linked with class, with poverty, with lack of access, with who is an essential worker, with who takes mass transportation, who lives in what zip code, then clinically … it’s what shows up in front of you,” Hart said. “And I just think not enough clinicians are aware of that, of that history. And many are trying to hide from the difficult conversations that might come along with how different groups have been treated differently by the system.”
How do we achieve race-conscious healthcare?
According to Cerdeña, race-conscious medicine is a response to race-based medicine and considers racism to be a risk factor or problem rather than race. Recognizing the effect of racism on health outcomes “changes the equation,” Cerdeña said.
“We are no longer considering somebody by virtue of their race to be at increased … or lower risk for certain outcomes and it creates a responsibility to treat that and to intervene on racism,” she explained. “That means that I will advocate for policies that will put that person in a better environment, I will probe to consider what are the experiences of racism that somebody is encountering, I will recognize that these are not the experiences of individuals and that these are the result of interlocking and mutually constitutive and oppressive structures.”
Cerdeña emphasized how this thinking shifts the focus away from individual risk factors in terms of choices and behaviors, but towards targeting the environmental and social barriers to their health.
She argued that it should become a norm for doctors to think critically about dynamics such as patients’ experience with systematic oppression, access to affordable housing, access to health insurance and whether they need an interpreter to help them navigate the healthcare system.
“I think the norms really need to be that people pay attention, learn to know what racism looks like, how it’s institutionalized, how it is propagated,” Cerdeña said. “[That means] noticing all those dynamics, really centering patient narratives, and empathizing because everyone is entitled to that.”
Cerdeña believes that physicians have a responsibility to advocate for the policies that maximize their patients’ health, through increasing opportunities for preventive care and having a “structural solution” that can produce “tangible outcomes.”
She provided examples such as expanding Medicaid or addressing New Haven’s eviction crisis as potential legislation physicians should advocate for on behalf of their patients.
“We are the ones who are actually interacting with our patients and can be thinking about these things,” Cerdeña said. “We’re not always going to be the ones who are actually enacting legislation or local community interventions. But we have a voice … and it’s important for us to recognize how racism harms health, and to consider ourselves as important actors in the fight for racial health justice.”
According to Hart, when he arrived at the Office of Health Equity in 2021, there were already efforts under way to transform the medical school education, which also translates to equity work for providers within the system. He attributes the launch of this work to the efforts spurred by the Lancet article co-authors, alongside other key leaders at the School of Medicine.
Hart noted that although there is currently a “lack of awareness” within current providers regarding implicit bias and racism, and that it is difficult for many physicians to reconcile with these truths, the system can be transformed through “a generational shift” of physicians focused on delivering race-conscious care with a more equitable medical curriculum.
“There’s a whole generation of physicians that have kids who are growing up in a world that’s hard to segregate, [but] especially with online access, people can meet people from all around the world and break down barriers,” Hart said. “We are just kind of taught things differently in medical school, and maybe we’re a little bit more critical of the dogmas of medicine. … We will get there as more of the younger generation rises to power and takes on clinical leadership roles.”
Roberts emphasized that this shift to race-conscious medicine and de-racializing healthcare in America will take a long time. She hopes that in the future, more will be done to extricate the ties between racism and medicine.
“Right now we’re in, you know, like a 60-year-old experiment,” Roberts said. “The 60-year-old experiment is Black people having more equal access to white healthcare spaces… It’s miserably failing in a lot of ways. … We have now at least two decades or more of research showing that there’s disparate care. So little has changed in those 20 years. What are we doing if that is where we’re at? More has to be done.”
In 2021, the National Kidney Foundation and American Society of Nephrology reassessed the inclusion of race in diagnosing kidney disease, resulting in a novel eGFR equation that estimates kidney function without the inclusion of a race variable.
Correction 2/27: This article has been updated to accurately reflect Asabor’s wording.