While scientists widely agree race is a social construct, it is often conflated with biology, implying that race governs how the body functions, and is a key factor in medical treatment, notes MedicalBrief.
Some months ago, a lab technologist at Barnes-Jewish Hospital in the US mixed the blood components of two people: Alphonso Harried, who needed a kidney, and Pat Holterman-Hommes, who hoped to give him one, reports Kaiser Health News (KHN).
The goal? To see whether Harried’s body would instantly see Holterman-Hommes’ organ as a threat and attack it before surgeons could finish a transplant. To do that, the technologist mixed in fluorescent tags that would glow if Harried’s immune defence forces latched on to the donor’s cells in preparation for an attack. If, after a few hours, the machine found lots of glowing, it meant the transplant would be doomed.
It stayed dark: they were a match.
Both recipient and donor were surprised. Harried is black. Holterman-Hommes is white.
“People often conflate race with biology,” said Dr Marva Moxey-Mims, chief of paediatric nephrology at Children’s National Hospital in Washington, DC. Yet “all bodies bleed red”.
She’s not talking just about kidney medicine. Race has been used as a shorthand for how people’s bodies work for years across many fields – because it was based on what was considered the best science available at the time. For example, US paediatricians recently ditched a calculation assuming black children were less likely to get urinary tract infections after new research found the risk had to do with past history of fevers and past infections – not race. And obstetricians removed race from a calculation gauging patients’ ability to have vaginal births after previous Caesarean sections, after determining this was based on flawed science.
Still, researchers say race-based guidelines are a fraction of those being used to assess patients, largely based on assuming that how a person looks reflects their genetic makeup.
Race does have its place during a doctor’s visit, however. Medical providers who give patients culturally competent care – acknowledging heritage, beliefs, and values during treatment – often see improved outcomes.
Race is a useful tool for identifying population-level disparities, but experts say it is not very useful in making decisions about how to treat individual patients.
Because using race as a medical shorthand is at best imprecise and at worst harmful, a conversation is unfolding nationally among lawmakers, scientists and doctors who say patients should ask if – and how – their race is factored into their care.
“The path forward is to use race responsibly, not how we’ve done it in the past,” says Dr Nwamaka Eneanya, a nephrologist with Fresenius Medical Care.
The perception of such a thing as a “black” or “white” kidney quietly followed patient and donor as Harried and Holterman-Hommes were en-route to the transplant – in their medical records and in the screening tests.
Medical records described Harried as a “47-year-old black male”, Holterman-Hommes as a “58-year-old, married Caucasian female”. Harried never provided his race or spoke to his physicians about the influence of race on his care, but for two years or more his classification as “black or African American” was factored into the equations doctors used to estimate how well his kidneys worked.
In 2021, reports KHN, a national committee determined race has no place in estimating kidney function, a small but significant step in revising how race is considered.
Dr Lisa McElroy, who performs kidney transplants at Duke University, said constant consideration of race “is the rule, not the exception, in medicine”.
She no longer mentions race in patients’ notes. “It has no bearing on the clinical care plan or biology of disease.” Yet, such assumptions still extend throughout healthcare. Some doctors, for example, continue assuming black patients cannot handle certain blood pressure medications, even while researchers have concluded those assumptions don’t make sense and could prevent patients from achieving better health by limiting their options.
In Harried and Holterman-Hommes’ case, one example was an informational guide given to Holterman-Hommes that said African Americans with high blood pressure could not donate an organ, but Caucasians with high blood pressure might still qualify.
“I can’t believe they actually wrote that,” said nephrologist Dr Vanessa Grubbs from the University of California-San Francisco. That worries Grubbs because using race as a reason to exclude donors could create a situation where black transplant recipients must work harder to find a living donor.
“Criteria such as these become barriers for transplantation,” said Dr Rajnish Mehrotra, head of nephrology at the University of Washington. He said that type of hypertension distinction could exclude potential donors, like the 56% of black adults with high blood pressure in the US, when more of them are sorely needed.
Harried and Holterman-Hommes met 20 years ago when they worked at a non-profit organisation for homeless youth in St Louis. Harried was the guy who pulled kids out of their ruts and into a creative mindset, Holterman-Hommes was the CEO who kept the donations coming in.
Harried resigned in 2018 as his health declined. Then in 2021, Holterman-Hommes saw a KHN article about Harried and decided to see if she could help him.
Although Holterman-Hommes’ mother was born with one kidney, she had lived a long, healthy life, so Holterman-Hommes figured she could spare one of her own.
But her initial tests showed high blood pressure readings, and lower-than-ideal kidney function, so she re-did both sets of tests. Her results had improved.
Barnes-Jewish Hospital later said it had given Holterman-Hommes an outdated guide, “an unfortunate circumstance that is being corrected”, and provided a new one that does not say black people with hypertension cannot donate. Instead, it says people cannot donate if they have hypertension that was either diagnosed before age 40 or requires more than one medication to manage.
But “at some point, it was a policy”, said Harried, whose kidneys have been failing for several years.
There is little transparency into how medical centres incorporate race into their decision-making and care, notes KHN.
Tanjala Purnell, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health studying disparities in kidney transplantation, said several centres still use race-based criteria, though some now decide case by case.
Dr Tarek Alhamad, medical director of the kidney programme at the Washington University and Barnes-Jewish Transplant Centre, said race-based criteria for kidney donations aren’t created to exclude black people, but rather, born of a desire to avoid harm.
“African Americans are more likely to have end-stage renal disease, and end-stage renal disease related to hypertension. And they’re more likely to have genetic factors leading to kidney dysfunction,” said Alhamad.
Compared with white and Hispanic donors, non-Hispanic black donors are known to have more risk for developing kidney failure because of their donation.
The science
Researchers are studying a possible way to clarify who is really at risk in donating a kidney, by identifying specific risk factors.
Specifically, a gene called APOL1 could influence the likelihood of developing kidney disease. All humans have two copies of this gene, but there are different variants. Having two risk variants increases the chance of kidney injury.
The risk variants are most prevalent in people with recent African ancestry. About 13% of African Americans have the double whammy of two risk variants, said Dr Barry Freedman, chief of nephrology at the Wake Forest School of Medicine. Even then, he said, most people in that group won’t get kidney failure. “We think they need a second hit, like HIV infection, or lupus, or COVID-19.”
Researchers focused on health equity say that while APOL1 testing could help separate race from genetics, it could be a double-edged sword.
Purnell said if APOL1 is misused – if a transplant centre rules that no one with two risk variants can donate, rather than using it as a starting point for shared decision-making, or if doctors offer the test based only on a patient’s looks – it could add another criterion to the list by which people are excluded.
“We have to do our due diligence,” said Purnell, “to ensure efforts to be protective don’t end up making the pool of available donors for certain groups smaller.”
Purnell, McElroy, and others steeped in transplant inequities say that as long as race is used as a stand-in for someone’s ancestry or genetics, the line between protecting and excluding people will remain fuzzy.
So where does race belong in kidney transplant medicine?
Many physicians said it primarily serves as a potential indicator of hurdles patients may face, rather than as a marker of how their bodies function.
For example, McElroy said she might spend more time with black patients building trust with them and their families, or talking about how important living donations can be, just as she might spend more time with a Spanish-speaking patient ensuring they know how to access a translator, or with an elderly patient emphasising the importance of physical activity.
“The purpose is not to ignore the social determinants of health, of which race is one,” she said. “It’s to help them overcome the race-specific or ethnicity-specific barriers to receiving excellent care.”
In April, a kidney from Holterman-Hommes’ body was successfully placed into Harried’s. Both are doing well.
See more from MedicalBrief archives:
US paediatricians’ association to bin outdated race-based guidelines
COVID toll turns spotlight on Europe’s taboo on data by race
Ethnicity as a factor in vulnerability to COVID-19