One hot topic during a recent webinar on diversity in clinical trials centered around whether researchers should use race in a clinical trial. As one viewer asked: “How can we more clearly discuss the scientific value of racially diverse clinical trials without perpetuating the myth of biological race?”
“First of all, if you are thinking about using race in your studies, don’t,” said panelist Jonathan Jackson, PhD, assistant professor of neurology at Harvard Medical School and director of the CARE Research Center at Massachusetts General Hospital. “If you’re going to be using a race as a construct, it may be potentially useful for dimension reduction, but it is not sufficient. That’s not a reason to include it.”
“If you’re thinking about including race as variable, you have to consider that there are massive political consequences,” he continued. “It is never neutral and it is never scientific to include this variable in our studies. We do it anyway because it’s convenient, not because it is scientifically valid or vigorous.” Race changes with almost every United States Census, he added, and it does not generalize beyond the United States.
“It’s a really bad proxy of what we think of as different kinds of discrimination and racism. It obscures and masks true variability, which means if we are using it in our models, we’re worsening our models by leading on this variable,” Jackson said.
Race has less do with skin color and cultural practices than whether people have been a target of systemic racism. “We should be measuring that instead of what people call themselves,” he explained. “It tends to be used in the wrong way, so you have very well-meaning scientists who want to try to understand how race is impacting these kinds of variables.” It also inadvertently centers and normalizes whiteness, the use of the English language, wealth, and excessive education, he said. He also criticized using whites as a reference group in a global study when they actually are a global minority.
Panelist Clyde W. Yancy, MD, MSc, recently co-authored a paper about recalibrating the use of race in medical research.1 “The only space where we allow the use of race is if your intention is to further elucidate evidence of healthcare disparities,” he said. “We make explicit reference to the fact that race is not a surrogate for biology, and it’s not even a surrogate for the social construct. Race is a surrogate for racism. That’s a pause moment.”
“To infer that there is something uniquely different as a function of race and imply that is biologic is a miss,” he continued. “That is ill-advised. But if you’re trying to elucidate ongoing disparities, then it’s appropriate.”
Yancy and colleagues did not recommend abandoning race from medical research efforts. “Dislodgement of race from research may hide still-evident and often egregious episodes of health disparities,” they wrote. “If for no other reason than the further exposition of health inequities and systemic racism, the use of race should for now persist in medical research. But the imperfectness of race as a tool is problematic.”1
They suggested developing another variable to replace the use of race. “Such replacements need to proceed with rigorous validation practices, ensuring the generalizability of the results, and solidifying that whatever changes are made will help reduce, rather than exacerbate, existing inequalities,” the authors wrote.
In a volatile social landscape, it may not be possible to determine exactly how race-specific research efforts may lead to a “better, more fair world.” “At a minimum, however, medical research should not aggravate already-embedded gaps between the privileged and the disadvantaged,” the authors concluded. “Just as the lens of science was used to establish a flawed premise of biological race-based differences, so should science now focus on illuminating that which is represented by race and become a trailblazer toward better health equity.”
- Yancy CW, McNally E. Reporting genetic markers and the social determinants of health in clinical cardiovascular research — it is time to recalibrate the use of race. JAMA Cardiol 2021;6:400.