Carolyn Beccia is an author & illustrator. She is also the Editor of The Grim Historian.
“Race norming” is the medical community’s dirty little secrets
The drama began as a simple Tweet. The British National Health Service (NHS) posted that they needed blood donations. But it was how they worded the request that got them pilloried by the Twistosphere.
We need “black blood,” read the Tweet.
Over the following days, the racism accusations got bloodier than a full blood bank. Many people complained that race is a social construct that could not classify blood types. The NHS was about to get ejected with one press of the cancel button…
But the NHS had a rational defense.
In their follow-up Tweet, they explained, “Everyone’s blood IS NOT the same, so you can stop calling us racist.”
Fair enough, but I also understand the public’s knee-jerk reaction. The blood that courses through our veins certainly appears the same. We all bleed the same red, sticky liquid.
But our blood is different. And matching a blood donor to a blood receiver is more complicated than most people think. ( I learned this the hard way when I needed an emergency blood transfusion.)
Every person’s blood contains trillions of red blood cells, covered in proteins and sugar. Those sugars classified as A, B, AB, or O, are what make our blood unique. Those groups get more individualized depending on whether we carry a protein called the Rhesus (Rh) antigen. Drill down further, and our blood gets even more complicated — over 300 antigens can activate the immune system and reject a match.
This is why blood banks must store blood by race — it facilitates a quicker match. For example, if you are Black, you are ten times more likely than a white person to have a rare Ro subtype common in patients with sickle cell disease.
But while the NHS may be forced to segregate blood by race, this issue runs far deeper than matching blood types. There are other cases in which race doesn’t have any diagnostic relevance to a patient’s treatment or outcome.
And yet, it is still being used in medical diagnosis.
The practice of using race to determine medical treatment is referred to as “race norming” or “race correction.” With race norming, physicians plug your race into an equation that then “corrects” or adjusts your treatment based on your race.
For example, let’s say you go to the ER complaining of chest pain. Your cardiologist is encouraged by the American Heart Association to use a predictive algorithm called the Get with the Guidelines®–Heart Failure Risk Score. If you are “nonblack,” the equation subtracts three points.
And voila…with the click of a button, just being Black or Latinx makes your little chest pain less serious. Or so you hope.
Unfortunately, it is not just cardiologists who use race to determine medical care. Let’s say your kidneys are on the fritz. Your doctor orders an Estimated Glomerular Filtration Rate (eGFR) — a test to measure your level of kidney function and determine your stage of kidney disease. If you are Black, the eGFR algorithm spits out a higher value, thereby putting you at lower risk for kidney failure. And yet again, your case is taken less seriously.
The justification for a higher eGFR value in Black patients is that statistically, Black people have higher levels of serum creatinine concentrations — an indicator of healthy renal function. It is still unknown why, but one ridiculous theory is that Blacks have more muscle mass.
Yes, you read that correctly. Black patients are evaluated at a lower risk for kidney failure because they are believed to have more muscle. Black people can jump, so their kidneys must work better.
Ostensibly, this syllogistic logic is squirrelly. I didn’t go to medical school, but I am pretty confident that “Black people are more muscular than white people” is not what they should be teaching in medical school. Yet, these myths persist. One study found that people perceived Black people as more muscular than white people even when they had the same muscle mass.
And if you are Black, you better pray your doctor’s more auspicious assessment is correct. According to The National Kidney Foundation, African Americans have a 76 percent lower odds of obtaining a kidney from a living donor.
Doctors use race norming for minor complications too. Let’s say you go to the ER with flank pain. Your physician uses the STONE calculator to predict the likelihood of an uncomplicated ureteral kidney stone. If you are white, the calculator adds three points to your score, thereby making your flank pain more serious.
And if you are Black, your probability of being sent home to pass that stone without medical intervention is higher. But forget asking for painkillers. A recent study found that 50 percent of medical students attributed higher pain tolerance to Black patients than white patients.
But arguably, the most egregious example of race norming is the recent class-action lawsuit brought against the NFL. For decades, the NFL used race norming equations in concussion settlements. Of course, the NFL evaluated Black players at a lower risk for cognitive impairment, which skewed payments toward white players. The NFL was forced to change its evaluation process after losing a lawsuit brought against them by Black players. Now, the NFL is struggling to rectify its discriminatory policies.
But these discriminatory policies are hard to weed out because of the long history of racial discrimination in medicine.
During WWII, blood banks labeled blood N for Negro, and blood was segregated by race (and not for scientific reasons). Centuries ago, society believed that rich, extra pale people had blue blood because their blue veins were more prominent. (It’s from this pseudoscience that we get the term “blue bloods.”)
In 1851, Dr. Samuel Cartwright claimed that black people had smaller brains and weaker lungs. And oddly used it to justify working long hours in fields to improve lung capacity.
Thomas Jefferson’s best-selling book “Notes on the State of Virginia” espoused the most pernicious views of racial inferiority. Jefferson claimed that Blacks were inferior to whites because they had different colored blood and bile. And to put the nail on the racist coffin, he wrote, “the difference is fixed in nature.” Clearly, he didn’t want to lose his “fixed” slaves.
Is it race or racism that determines a patient’s medical treatment?
Medical practitioners are beginning to reject race norming because race is a social construct that DNA has proven irrelevant. (Humans share 99.9 percent of our DNA.)
Take sickle cell disease — a genetic mutation that occurred to protect people in Africa from malaria. If a white person were raised thousands of years ago in the same location, they would have experienced the same genetic mutation.
Genetic mutations, like sickle cell disease, do not occur in a vacuum. The environment caused these mutations. Or, more precisely, the environment’s bugs — parasites, malaria-infected mosquitoes, and bacteria — that altered a person’s genetics and, in turn, their blood type. In other words, we continue to use race to determine medical risk when we should be using the environment.
These risk calculators function like any stereotype — they are a shortcut. But especially in science, shortcuts can come with devastating consequences.
Shortcuts lead to errors.
But some studies are trying to rectify these disparities. Take, for example, the Jackson Heart Study (JHS) — a longitudinal study conducted in Jackson, Mississippi, to examine the genetic and environmental risk factors that cause more African Americans to suffer from heart disease. Do more African Americans suffer from heart disease due to metabolites or the lower socioeconomic status found in rural Mississippi? We have a classic chicken vs. egg problem to sort out. And the JHS is at least attempting to untangle that gordian knot.
Precision medicine, not personal medicine
In a perfect world, medicine would be tailored to the individual. Currently, healthcare is moving in that direction. Personalized medicine has made way for “precision medicine” — healthcare based on a patient’s genetic, environmental, and lifestyle factors.
But the problem with including race in precision medicine is that many mixed-race patients do not fit into one category. Most people check a box based on whichever race they most identify with. In other words, that box is a personal choice and should not affect your medical treatment.
Fortunately, the medical community is beginning to remove race from calculators. For example, the VBAC calculator once used a patient’s race to determine who was more likely to have a successful vaginal birth. If you were Black or Hispanic, you got a lower score and were more likely to give birth through C-section.
After much pressure from physicians, the VBAC calculator finally removed race from the equation. Now, other areas of medicine — cardiology, surgery, neurology, general, etc. — need to follow obstetrics’ example.
Before that happens, patients must advocate for their healthcare. One solution is to find a doctor who treats you like an individual and not part of a statistical equation.
Blood may be exquisitely unique, but medical care should be equal.