True Colors: Exploring the Roles of Race and Ethnicity in Medicine

The role of race and ethnicity in contemporary society is an extremely sensitive topic across many areas—politics, business, entertainment, even sports. It always has been, and always will be a lightning rod for controversy. Naturally, when discussing the role of race and ethnicity in healthcare, things aren’t any different.

In recent years, the medical significance of a person’s race and ethnic background has become a hot topic. New data and insights from groundbreaking clinical trials have prompted a flurry of scientific papers, editorials, and other pontificating from researchers, physicians, sociologists, policy makers, and other experts from a variety of disciplines and ideological backgrounds.

Despite the potential benefits of this research, it is not being embraced by everyone. Like any controversial idea, it has its share of doubters in the medical, scientific, and political communities. Some argue that because our society has come such a long way since the days of segregation, biomedical research that focuses on differences in race and ethnicity is a form of regression, with the costs outweighing potential benefits. The concern is a valid one, but proponents of this research point out that if investigating the genetic basis of variability in disease presentation and response to medications, both within and among racial and ethnic groups, can lead us to an improved understanding of the mechanisms of diseases, it is too important not to proceed.

MDNG: Focus on Multicultural Healthcare spoke with Esteban González Burchard, MD, MPH, a pioneer and key player in the ongoing effort to examine the role of race and genetics in medicine. Dr. Burchard, who serves as assistant professor of Biopharmaceutical Sciences and Medicine at the University of California San Francisco (UCSF), has made it his mission to determine why significant disparities in disease prevalence and severity and responsiveness to common medications exist among racial and ethnic populations in the United States.

This article will examine the relevance of racial and ethnic categories in disease research, focusing on findings from pertinent studies by Dr. Burchard and other investigators, as well as how this knowledge can potentially alter the way diseases are managed. The passionate arguments put forth by those who support and those who oppose focusing on race in medicine, and the rationale behind both viewpoints, will also be explored.

What We Know

Researchers and public health experts have long known that significant disparities exist among racial and ethnic groups in terms of disease prevalence, incidence, and severity. The evidence is overwhelming; the following is merely a sampling:

• African Americans are nearly four times more likely to develop kidney disease than Caucasians.

• Mexican Americans, the largest Hispanic subgroup, are twice as likely as non-Hispanic whites to be diagnosed with diabetes.

• Heart disease is the leading cause of deathfor American Indian/Alaska Natives.

With statistics like these in mind, researchers have been digging further and exploring what other vital pieces of information we could be missing, seeking not only greater understanding of the discrepancies between different racial and ethnic groups, but also of the discrepancies within these groups.

Can this information be accurately collected and analyzed in order to reveal patterns and trends that can lead to more targeted research that might produce more effective interventions and better outcomes? According to the data we’re now seeing from initiatives like the Genetics of Asthma in Latino Americans (GALA) Study, the answer is yes.

The GALA Study

Nearly a decade ago, Burchard and colleagues at UCSF launched a study based on a common “hunch” that Puerto Ricans had a higher prevalence and greater disease severity of asthma than other Hispanics. The hunch was correct; data from a Centers of Disease Control and Preventionreport confirmed that there were indeed racial differences in asthma prevalence and severity.

Subgroup analysis from a multi-center, collaborative effort corroborated that Puerto Ricans with asthma had more severe disease than did Mexicans on the basis of lung function measurements, responsiveness to ß2-adrenergic agonists, and healthcare resource use. “Because short-acting inhaled ß2-adrenergic agonists are the most commonly prescribed medications for the treatment of asthma, the finding of a differential response among ethnic subgroups is unique and important,” the authors claimed. The American Academy of Pediatrics took note, identifying asthma among Latinos as “an urgent priority for further research.”

Dissecting the Arguments

Although the GALA study and similar trials involving other disease states and minority groups produced compelling results, many healthcare researchers oppose race-based research in principle, on the grounds that the foundation of such research rests on essentially meaningless social constructs, and that such research can actually distort our understanding of the very subjects we are investigating.

Although there are many fiercely contested assumptions and claims surrounding the topic of race in healthcare, there are two arguments that particularly stand out, and therefore, merit further attention.

1. “Race” is Not a Valid Biological Term

In their published paper titled “Race and Genetics: Controversies in Biomedical, Behavioral, and Forensic Sciences,” authors Pilar Ossorio and Troy Duster wrote that “prominent scientists have argued that race is not biologically real, that it is such a flawed, imprecise concept that it should not be used in research or medicine.” Other experts disagree, and contend that retaining racial categories is important because “they can serve as useful proxies for ancestry,” and that “using racial categories will improve research quality or decrease cost by reducing irrelevant background variability between cases and controls."

2. There is No Basis in the Genetic Code for Race

According to a review article by Burchard and colleagues published in the New England Journal of Medicine, some researchers feel that racial classification may not be applicable to biomedical studies because it reflects “a fairly small number of genes that describe appearance” and “there is no basis in the genetic code for race.” Others take the position that, given the history of discrimination and marginalization in the United States, “excessive focus on racial or ethnic differences runs the risk of undervaluing the great diversity that exists among persons within groups.”

However, the authors countered that “this risk needs to be weighed against the fact that in epidemiologic and clinical research, racial and ethnic categories are useful for generating and exploring hypotheses about environmental and genetic risk factors.” Further, they argued that although constructing barriers to the collection of this information “may provide protection against the aforementioned risks,” it can also “simultaneously retard progress in biomedical research and limit the effectiveness of clinical decision making.”

The Racial Privacy Initiative

Do the racial/ethnic/cultural groups with which people are identified accurately define a group in a scientifically useful way? If so, do these groups differ from each other genetically in any meaningful way? If so, do these differences have measurable biologic implications? The answers to these and other questions are at the heart of the debate over race and medicine. Some support race-focused medical research, while others oppose any endeavors that isolate people by race and ethnicity, no matter the rationale.

In October of 2003, an amendment called the Racial Privacy Initiative was proposed in California; the objective was to prohibit state and local governments from classifying any person by race, ethnicity, color, or national origin. Although the proposition excluded a ban on classifications for the purpose of medical research, Burchard and colleagues feel that “the abolition of the collection of data on race or ethnic group for all other purposes would eliminate these data from many public databases on which clinicians and scientists rely in order to make meaningful inferences about the effects of race and ethnic background on health and disease in person and populations.”

The Initiative failed to pass; however, the fact that it was even proposed roused concerns among researchers like Burchard, who feel that ignoring factors like race and ethnic background “would be detrimental to the very populations and person that this approach allegedly seeks to protect.” After all, one could argue that if Burchard and colleagues had not been granted access to medical data organized into racial and ethnic classifications, they may not have uncovered the pivotal information that was uncovered regarding asthma prevalence and severity among Hispanics.

“Although there are potential social costs associated with linking race or ethnic background with genetics, we believe that these potential costs are outweighed by the benefits,” noted Burchard and his team. “Ignoring racial and ethnic differences in medicine and biomedical research will not make them disappear. Rather than ignoring these differences, scientists should continue to use them as starting points for further research.

Only by focusing attention on these issues can we hope to better understand the variations among racial and ethnic groups in the prevalence and severity of diseases and in responses to treatment. Greater understanding would provide the opportunity to develop strategies for the improvement of health outcomes for everyone.”

Where Do We Go From Here?

The debate over whether race and ethnicity should be isolated and examined in medical research will continue for the foreseeable future. In the meantime, Burchard and his colleagues will focus their attention on the GALA study and other trials, such as SAGE (Study of African Americans, Asthma, Genes & Environments), an initiative that was established in order to identify ethnic-specific, pharmacogenetic, and asthma-associated genetic risk factors among African Americans.

“Our goal is to replicate the results that we’ve seen in the first studies with similar cohorts,” said Burchard, who feels that it is imperative to capitalize on ever-evolving technologies that can help produce more comprehensive data.

“We’re just hitting the horizon now,” said Burchard. “We have more capabilities, and we’re better able to identify different risks factors, and in turn, make healthcare better for everyone.”

Kate Huvane is a freelance writer and former MDNG editor.