A systematic review of the use of race in pediatric clinical practice guidelines found that it was frequently used in a potentially harmful way.
The study was published in JAMA Pediatrics last month. The goal of the review was to understand how the use of race might affect structural racism and health inequities. Clinical practice guidelines are a common way to summarize best practices and are developed by trade and advocacy groups or the government. The literature review included PubMed, Medscape and other sources of text. Only a third of identified articles were eligible for a full review; the rest did not use race terms at all or with a clear justification.
Race terms were used a total of 175 times in those studied. In 73 guidelines, a race term with a potential negative effect occurred 87 times (50%). In 45 guidelines, a race term with a positive association appeared 50 times (29%), according to the review.
“We knew that medicine had a long history of ascribing blame to the biology of race,” explained Courtney Gilliam, M.D., pediatric hospital medicine fellow at Seattle Children’s and an author of the study. In fact, racism, not race, is a risk factor. Implying otherwise is not only factually inaccurate and stigmatizing but also has consequences for the way care is delivered. That’s why the authors, which included pediatric hospitalists, a critical race theory scholar and a health sciences librarian, wanted to interrogate the gold standards of pediatric care.
To help identify potential race terms, the team pulled from National Institutes of Health-designated U.S. health disparity populations. If a term was being used to describe a disparity, inclusivity, representation, geographical risk or cultural humility, that was seen as having a positive effect. But if it normalized a majority group or centered whiteness, conflated race as a genetic risk or associated it with a negative stereotype, or if race was used to establish a testing threshold or change the standard of care, it was associated with a potential negative effect.
The group was surprised to find that 70% of articles identified did not clearly use race terms, which it saw as a missed opportunity.
“We’re not calling you out for not using race, but we are asking that you really should be looking at race and systemic racism. Because we really need to interrogate those systems,” Gilliam said. In some articles that did not qualify for review, a race term was used but without a clear rationale. “You have to be intentional,” Gilliam said. As for those that used race negatively, Gilliam believes it is the inevitable product of racism seeping into a system.
Just before the study was published, the American Academy of Pediatrics put out a statement recognizing “that race is a historically derived social construct that has no place as a biologic proxy.” It called for its own evaluation and the fundamental rethinking of medical practice more broadly, which has “inaccurately applied race correction or race adjustment factors in its work.” That leads not only to varying approaches to care but also to uneven outcomes.