Neurology Editors on New Guidelines for Reporting Racial and Ethnic Disparities in Research

Some medical journals, including those in neurology, have developed new standards and criteria for addressing racial and ethnic disparities in medical and scientific research while others are in the process of doing so.

For more than two decades, the calculation of estimated glomerular filtration rate (eGFR) equations to assess chronic kidney disease (CKD), by using serum creatine and factoring in age, height, weight, and gender, has included a race-based coefficient that assumes Black people have greater muscle mass leading to naturally higher serum creatinine levels. Every eGFR result is then reported with two values: one for Blacks and the other for non-Blacks.

This flawed racial assumption may not have been intended to lead to less equitable outcomes, but that can indeed be the result: if the eGFR calculation assigns Black patients as having higher kidney function, that can lead to delays in referrals for specialty care and transplantation, as documented in a 2020 study published in the Journal of General Internal Medicine. In recent years, an increasing number of institutions, including the University of Washington and Mass General Brigham, have moved away from the use of race in estimating GFR.

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This example from nephrology, not neurology, dramatically illustrates the ways in which the longstanding assumption that race is a biological fact rather than a social and cultural construct can have severely detrimental effects on the health of Black people.

In an effort to address these issues, some medical journals have developed new standards and criteria for addressing racial and ethnic disparities in medical and scientific research while others are in the process of doing so.

In February, the joint American Heart Association (AHA)/American Stroke Association (ASA) journal Circulation introduced new disparities research guidelines, aimed at “providing guidance for authors submitting scientific manuscripts that primarily focus on reporting health differences by race and/or ethnicity.”

“Our November 2020 AHA Presidential Advisory called out structural racism as a fundamental driver of health disparities,” said AHA president Mitchell Elkind {snip}

A key underlying principle of the new guidelines is the understanding that “race is a heterogeneous social construct, and that in research, social and structural forms of racism and/or bias” such as socioeconomic status, access to care, and environmental factors should be considered and explained when applicable to research findings.

“Recognizing that race is not a biological entity, but really a social construct, is an important approach to take,” Dr. Elkind said. “When reporting on race in studies, we have to move away from people assigning others a race or using race as a fixed entity that explains results or outcomes. Giving people the opportunity to self-identify their race is important. We must also understand that within any so-called racial group there are going to be a lot of differences, and using race as a catch-all fails to explain a lot of variability. Recognizing these issues as limitations in interpreting studies is important, so one doesn’t come out with a statement about how a certain race or ethnic group has a certain outcome and leave it at that. One has to think about all the other factors that go into those differences, that relate to economic opportunities, educational opportunities, and many other factors beyond race.”

Neurology Editor-in-Chief José G. Merino, MD, FAAN, professor of neurology at Georgetown University, praised the Circulation guidelines and noted that Neurology is working on guidance of its own.

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“Many journals are taking this on, the issue of how to handle race and ethnicity from a research point of view,” he said. “For example, we do see differences in the rates of dementia between Blacks and Whites, but that’s not because of inherent biological differences but rather because of the way our society is set up, because of discrimination and systemic bias that exposes some people to more risk factors than others.”

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