New York CNN —
Jazmine Evans was diagnosed with kidney disease in 2012 at the age of 17. She received a kidney transplant in July 2023 after being on the transplant waiting list for four years. Today, a year and a half after the transplant, Evans said she feels great, her kidneys are functioning “absolutely normal” and there are “no signs of rejection.”
But her path to transplant was not easy. Evans told CNN that she was listed for a kidney transplant in 2019, four years later than she should have been, because her race was used in the clinical equation to assess kidney health.
“I should have been placed on the transplant list in 2015 because there is no scientific reason why my race as an African American should affect how my kidneys function,” Evans said.
The formula used to evaluate Evans’ kidneys routinely overestimates kidney function in Black Americans, delaying Evans’ treatment. The equation’s overreliance on race is inaccurate and dangerous, but unfortunately remains common, according to a report from the National Academies of Sciences, Engineering, and Medicine released Wednesday.
The report found that race and ethnicity are used in biomedical research “sometimes in harmful ways”.
Clinical equations are used by medical professionals to assist in decision-making in patient care and treatment.
Race and ethnicity are often used to categorize Americans, but the report says these categories can be misused for scientific analysis. The report adds that this characterization contributes to the “persistent misconception” that humans are biologically divided on the basis of race, an idea known as “race science.”
Because race acts as a social rather than a biological determinant of health, it can influence an individual’s disease. The report criticizes the overuse of race in algorithms, treating race as a proxy for other variables such as socio-economic status and discrimination.
“Race is a very strong predictor of certain diseases,” ophthalmologist Dr. M. Roy Wilson, a co-author of the report, told CNN. “We just think it’s overused and over-reliant on, without considering what the underlying reasons for this disease are.”
The report also includes other examples where race has been inappropriately considered a cause of disease, such as sickle cell disease, which occurs among black people. This higher trend is thought to be due to geographic distribution or ancestry rather than race.
The use of race as a factor in determining health status and subsequent treatment plans may stem from “outdated assumptions about race.” This is the same assumption that influenced Evans’ treatment.
“There’s no question that many other clinical algorithms are based on racist thinking or outright racism,” Wilson said. “There is also no question that some race-based clinical algorithms are harmful.”
Some researchers suggest that increasing the diversity of disciplines that create these models can reduce algorithmic bias. CNN previously reported that some companies are offering “cross-functional expertise” in creating these algorithms.
To combat AI’s inaccurate assumptions, medical professionals should give “careful consideration” before deciding whether to include race in their calculations, the report said. Whether to include race in algorithms when “appropriate and scientifically justified” depends on the study and its goals.
Mr Wilson said this evaluation and justification should take place “throughout various stages of the research process”.
The report also recommended that researchers partner with “relevant communities” to include a wide range of authentic experiences with racial and ethnic groups.
Evans, who was not involved in the new report, is now an advocate for racial equity in health care. He said there is a need to reanalyze “common assumptions about patients based on race,” and that providers need to ensure that some of the tools used in their institutions have “layers of racism built into them.” He added that it is necessary to understand that Patient care decisions.
“Our understanding of race and ethnicity continues to evolve,” Wilson said. “That’s why this study was so important at this time.”
