Daniel B. Moore, MD, an associate professor of ophthalmology at the University of Kentucky in Lexington, admits that he’s somewhat uncomfortable being in the position of talking about race and ethnicity in the ophthalmology literature, and even that he has a “very limited understanding” of it. But he’s also the only one talking about it.
Last month he published a cross-sectional study in JAMA Ophthalmology of how race and ethnicity were reported in the ophthalmology literature last year.1 He found a number of inconsistencies in how researchers define and reference the race and ethnicity of study subjects. A total of 78 races or ethnicities were defined in the few studies that included race and ethnicity.
A social construct
“Clearly, I’m not an expert in this, and I shouldn’t be an authority figure,” Dr. Moore tells Retina Specialist. “I think, hopefully, it is quite clear and apparent to anyone who looks into it that the notion of race is not biologic; it’s a social/political construct.” That construct “served political, and social and economic purposes,” he says. “Science got involved and helped to propagate some of the racial theories that are still with us today.”
The idea for the study came to him when he read Angela Sciani’s Superior, The Return of Race Science (Penguin Random House), which explores how science embraced race to describe biological differences between peoples.
“She’s arguing that if we’re going to use race as a proxy in our scientific literature, we need to at least know what we’re talking about,” he says. “We at least need to be consistent so that people understand and discern what the topic is at hand. And she argues that that’s not necessarily the case in most of science.”
So Dr. Moore evaluated how articles published last year in the American Journal of Ophthalmology, JAMA Ophthalmology and Ophthalmology referenced race and ethnicity. Of 547 articles, only 42 percent (233) reported race and/or ethnicity. Only 4.4 percent (30 studies) actually described how they defined race/ethnicity.
“Race and ethnicity are very nebulous terms that are defined differently by different people, in different times and different places,” he says. “To just throw them into an article without really trying to characterize or describe what you’re measuring also has the potential to limit the applicability of your data.”
“Some governing bodies,” he notes, including the National Institutes of Health, have regulations on what race and ethnicity mean. “But even then,” he adds, “when you look at papers in our literature that follow NIH guidelines or are supported by the NIH, they’re not being utilized with much rigor.”
As his study points out, some authors describe as ethnicity what the NIH defines as race and vice versa. “Or they clump into one group race/ethnicity, or they use heterogeneous terms such as population or descent. It makes it hard to address this issue in any uniform manner.”
The challenge for science is using race or ethnicity in the physiological context—whether they’re interpreted as biologic, anatomic or genetic—as outcomes measures.
“The onus should be on us as a community and investigators to demonstrate why that is necessary, not vice versa,” he says. “We should not take any of that for granted. We really have to be rigorous in accessing why it’s being evaluated in the first place.”
Why it matters
However, referencing race or ethnicity, or both, in the literature can help providers and policymakers to better understand health disparities among socioeconomic groups, the so-called social determinants of health—disparities made all the more obvious in the COVID-19 pandemic.
“Just by saying that race is not scientific does not mean that race is not real,” Dr. Moore says. “Race is very, very real, and it has real effects on individuals and populations, and that’s where the social determinants of health care come into play.”
Science can’t address those disparities if it ignores race and ethnicity, he says. “So, first, being able to acknowledge disparities exist, but then trying to delve into why they do and what needs to be done about them are within the lane of scientists and researchers and those in health care.”
But, he emphasizes, the language used to reference race and ethnicity needs to be consistent. That may not be easy, but it’s important.
“It’s important because you want to ensure that the populations that are being evaluated are inclusive and representative, one, of the proposed population, but then, two, can be brought back to an individual practitioner’s own patients,” he says. For example, a large study in the northern Midwest would likely involve a largely white population, the findings of which may not be transferable to a practice in an urban center in the Northeast or South. “But being aware of that information and the potential limitations is very important so that you can take that under consideration,” he says.
Role in research
Clear definitions of race and ethnicity would also aid researchers in recruiting more representative study populations. “If a research study has a demographic that doesn’t seem appropriate for that particular area, you have to question why that may be—whether there’s no access, whether certain groups or individuals are feeling marginalized and, for a variety of reasons, don’t feel comfortable participating in research studies,” Dr. Moore explains. “We want to ensure that all those who can have the opportunity to participate and then gain from the benefits of research.”
Defining those parameters is a global task. “As our literature is becoming more and more global, as we’re being more inclusive of communities outside of our own country, it makes this an all the more complicated picture,” Dr. Moore adds. “We need to at least to try to have some measures of how we’re going to address this, and it likely would involve a global audience. So, this shouldn’t be a small group of academics from an institution here in America. It needs to be a very broad and inclusive group.”
This white associate professor from middle America who admits he’s a beneficiary of racial privilege may seem like an unlikely person to sound that clarion call, but so far he’s the only one. RS
— Richard Mark Kirkner
1. Moore DB. Reporting of race and ethnicity in the ophthalmology literature in 2019. JAMA Ophthalmol. 2020;138:903-906.