Race is a social construct; until we consider healthcare and research, where it is an increasingly outdated biomarker. Before treatment disparities get worse, we need to have a discussion. Let’s get started.
Race may once, long ago, been a stand-in for some perceived biological quality, but as the Human Genome project pointed out almost a decade ago, race is not a biological property; it has no genetic code. Medicine is in the midst of rethinking the role of race in our diagnostics and treatments, egged on by algorithmic and personalized medicine. One of the biggest current controversies that I wrote about here is the role of race in determining kidney function. But that is more emblematic of the shifting thinking.
The assumption is that racial categories can sufficiently distinguish populations with high or low prevalences of certain genes, allowing clinicians to identify high-prevalence groups for testing.
That quotation captures the essence of growing concern. When we speak of black Americans, we describe a group that hails predominantly but not completely from Africa. African-American is perhaps a bit better descriptor until you add those black Americans that come from the Caribbean. And from a personalized medicine point of view, where your genetics can make a difference, how should we count individuals of mixed ethnicity?
Increasingly we are finding genetic variations that make individuals more or less susceptible to diseases, but more importantly to treatments. In addition to genetic differences that influence our response to opioids, genetic differences influence the use of antiplatelet medication used in treating heart disease.
As the authors of the JAMA viewpoint (see sources) report on an adverse reaction to allopurinol, Severe Cutaneous Adverse Reactions, SCARs. The genetic variant, HLA-B*5801, was initially identified in Taiwan and additionally found in African Americans. Individuals with this variant are more likely to develop SCARs, so from a physician's perspective, screening meets the “do no harm” clause in our oath. The American College of Rheumatology, the specialists that treat gout and use allopurinol, suggested that Southeastern Asians and African Americans be screened. As it turns out, variations in the presence of this variant differ far more widely within a geographic or ethnic population than it does across a categorization by race.
Who is a Southeastern Asian?
Asian American is like African American, a racial characterization that doesn’t distinguish groups well. While US Census recognizes only Asian Americans, the EU recognizes 4 groups, East, South, Southeast, and Western Asians. Turkey is part of Western Asia. While the ACR suggests that their recommendation to screen Southeastern Asians includes individuals from China, Korea, and Thailand, “China and the Koreans are not usually considered Southeast Asian countries.” While this may seem to be a discussion about semantics, it has real-world implications - in who is screened for an allopurinol sensitivity. We could screen everyone, but that would be far more costly than a targeted screening – one of personalized medicine goals.
Race is a poor surrogate of social constructs and even more so, if not abjectly, of biology.
Race has played a significant role in identifying those at higher risk for COVID-19. But increasingly, it seems that race stands in for cramped living conditions, having to go to work, having more co-morbid conditions – being more susceptible and more exposed.
Throwing the baby out with the bathwater
If the genome is a better measure of one’s health potential, why persist in classifying individuals by race or ethnicity? It is these classifications that we use in treatment or research. As poor discriminators, they will perpetuate disparities in care. Genomic classification is not currently practical for the types of research that have wide clinical applicability. If we disregard race, what will take its place; are we really throwing out the baby along with the bathwater?
We need to begin to define new metrics that have greater discriminatory ability in studies and less discriminatory abilities in application. The holds equally true for continuing to use race in research involving health’s socioeconomic factors.
Just as the lens of science was used to establish a flawed premise of biological race-based differences, so should science now focus on illuminating that which is represented by race and become a trailblazer toward better health equity.
The utility of race to science has reached its end. It is time to let science guide us to better markers.
Sources: Race and Pharmacogenomics—Personalized Medicine or Misguided Practice? JAMA DOI: 10.1001/jama.2020.25473
Recalibrating the Use of Race in Medical Research JAMA DOI: 10.1001/jama.2021.0003