Many studies are fuzzy on race. Here’s why that’s a problem

What is race?

Even as it defines much of U.S. life and society, the answer to that question is not straightforward, particularly when it comes to health. In public health and sociology, there’s been a strong focus on understanding race as a social construct, particularly in the U.S. In biomedicine and genetics, it has often been used as a proxy for ancestry. Others understand it as the grey area between those two, a socially derived concept that is intrinsically linked with biology. The list goes on.

Though there’s no universal understanding of what race is (or how to measure it), biomedical journals are filled with papers referencing race without ever defining it. That makes it a challenge (or impossible) to know what to make of the findings.

“How many studies have you read that use race and ethnicity without describing those variables?” asked Chandra Ford, a professor at the University of California, Los Angeles.

When it comes to biomedical research, recent studies have found that scientists use different methods and definitions for assigning race. What method they used can make a huge difference in what to make of a study. Did they ask participants to self-describe their race? Did they determine it based on their own observations? Is race understood to be a social construct or a proxy for biological ancestry? Or do they locate it somewhere in the realm of epigenetics, where biology and society can’t exist independently?

Race can tell us a lot about the lived experience of a person, said Catherine Lee, a professor of sociology at Rutgers University. But for that to happen, researchers need to understand how racism informs our institutions and impacts individuals. In a 2013 study of research grants from the National Cancer Institute, Lee and a colleague found that more than 90 percent of the papers written from those grants mentioned race, but less than a third defined race or explained the role it might play in the research. 

More recently, a group of researchers detailed in the journal JAMA how medical studies often erroneously describe race as a cause of disease. It is standard to make note of racial disparities in health, Ford said, but when race isn’t defined, it can easily lead researchers, doctors and the public to mistakenly understand race itself as the cause of a disease or health problems.

This is particularly problematic when race and genetics are conflated. All too often, researchers conclude papers by pondering whether racial differences in health outcomes may be due to genetic or biological differences, even when they haven’t actually looked at study participants’ genetic background. That’s a problem, because race is not a good stand in for ancestry or the make-up of our DNA.

Mistakenly equating race with genetics reduces complex social, scientific, and economic structures to a single variable, dimming our ability to understand how broader social and environmental conditions determine how healthy we are and what diseases we get, said Michael Yudell, a professor at Drexel University who wrote a book on the history of race and genetics. Yudell has been meeting with the National Academies of Sciences, Engineering and Medicine in the hopes of convening a working group that would explore alternatives to using race as a variable in biomedical research.

“We need to think of race as a proxy for racism, rather than race as a proxy for biology.” — Michael Yudell, Drexel University

That’s not to say race should be banished from scientific research altogether, Yudell said, it just needs to play a different role. “We need to think of race as a proxy for racism, rather than race as a proxy for biology.”

Yudell wants to see geneticists trained so that they can make sense of their data using the tools that today mostly live in the realm of social scientists. Many doctoral students in biochemistry can easily go through their entire education without being exposed to rigorous scientific explorations of race and health, noted Lee. That may help explain the problematic tendency to conclude that genetic differences might explain racial disparities in health outcomes.

And that tendency isn’t without consequences. In medicine, sickle cell anemia, an excruciatingly painful disease that frequently leads to early death, is so associated with race (blacks have a higher incidence than many other large demographic categories) that doctors often miss signs of the disease in people who aren’t considered black in the U.S., even when they come from a higher-risk ancestry. That can lead to delayed treatment and medical complications for children experiencing excruciating pain.

But much of the burden of misunderstanding race in medicine falls on African-Americans, Hispanics, and other minority groups. For example, a study at the University of Virginia found that many physicians believe African-Americans have naturally higher pain thresholds and undertreat pain as a result. 

Carefully explaining how race has been assigned and defined in a study has become even more important as the field of epigenetics, which looks at how gene expression changes in response to the environment, gains steam. Racism, among other lived experiences, is believed to have biological impacts that may carry forward over a lifetime, and potentially even passed down to future generations. Since racial categories evolve over time, defining race and racism becomes evermore important in making sense of the complicated interplay between social structures, DNA and health outcomes.

“I have a lot of excitement and optimism that the field can deal with racism in much the same way that we’ve attacked other challenges to population health,” Ford said. “We need to study it like we would a virus — no one assumes that just because they’ve heard of a virus they know how it works.”

[Photo by Cate Gillon/Getty Images]