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The NIH Should Fund Studies on Racism, Not Race

Does anyone out there believe that the current, overwhelmingly-white opioid epidemic is due to racial genetic differences?

Earlier this year, during a discussion on marijuana legislation, Kansas Representative Steve Alford applied similar logic to a parallel situation. He argued that African-Americans “basically responded worst off … [to] drugs just because of their character makeup, their genetics, and that.”

In this reasoning, the Republican politician ignores the fact that rates of drug use and addiction are similar across races. He also ignores the real disparity: African-American drug users are almost three times more likely to be arrested for illegal drug use. His statement implies that these differences are a result of genomic susceptibility rather than racial inequality. Alford finds his imagined Black addict culpable at the level of DNA.

While Alford is being rightly skewered for espousing racist thinking, his views aren’t uncommon. In fact, the assumption that health disparities are caused by race — rather than racism — permeates more subtly in the practices of many organizations, including the National Institutes of Health (NIH).

In the most recent NIH Biennial Report to Congress, the words “genomic,” “genome,” and “genetic” are used a total of 556 times. In comparison, other words such as “social determinants of health,” “discrimination,” “poverty,” “socioeconomic status,” “racism,” and “sexism” appeared a total of 15 times in the entirety of the report’s 441 pages. In the decade between 1994 and 2005, the NIH funded 22,000 studies investigating genomics, 1,300 of which included discussion on race, genes and disease. The number of grants awarded to research the connection between health, racism and racial discrimination? Only 44.

On the subjects of disease and disparity, the NIH focuses on the genetic code inside individual bodies and ignores the wider contexts within which these bodies live, work, play and get sick. The NIH overlooks societal inequalities and gives genes too much credit — just like Alford.

The patients I see in clinic illustrate the shortcoming of this thinking. In my third year of medical school, I met Khiara, a six-year-old African-American girl who adores science and strawberry-pink hair clips with equal ferocity. The first words she ever said to me were, “I can’t breathe.” Her acute asthma attack struck just months after Eric Garner gasped the same three words.

As a Black child, Khiara’s risk of death from asthma hangs 10 times higher than a white girl her age. A child like her living in the South Bronx is 14.2 times as likely to be hospitalized for asthma-related complications than a child in a wealthier neighborhood less than two miles away. Despite her insistences, Khiara’s plumage of hair ornaments cannot protect her.

An overwhelming majority of the 2013 NIH Biennial Report’s section on asthma discusses biomarkers, immunotherapies and the development of the “African power chip,” a genome sequencing endeavor meant to “discover genes associated with asthma in African ancestry populations.” The report ignores the fact that due to unjust housing policies and highway projects, Black Americans have a significantly higher exposure rate to 13 out of 14 major pollutants, a majority of which are associated not only with asthma, but also heart disease and cancer. It also ignores that people of color are nearly twice as likely to live next to toxic waste facilities. More than half of the people who live in these residential areas — also referred to as “sacrifice zones” — are racial minorities. The distance between their homes and industrial plants that cough black smog and bleed hazardous chemicals is 1.8 miles — the same distance as seven rounds around a high school track.

Khiara is not uniquely susceptible to asthma because of her genetics. She is at risk because of a different kind of inheritance, one bestowed by the legacy of unrelenting racism embedded in American history. The NIH report’s emphasis on innate racial difference misses this larger picture. Genomic sequencing cannot solve — or even comprehend — asthma inequities. It can’t even come close.

In Steve Alford’s home state of Kansas, 89% of fatal opioid overdose cases were white. It’s hard to imagine the NIH leaping to create a “white power chip” to examine links between European genomes and opioid addiction. Across the nation, the majority-white epidemic of opioid abuse is being treated as a public health issue — a crisis storm whipped about by prescription practices, health care access and policy funding — instead of as evidence of genetic racial difference. Importantly, this understanding means the proposed solutions will be different as well: Remedies will center around infrastructure — clinics and counseling — rather than genetic technology.

Misdiagnoses are dangerous because the accompanying treatments remain ineffective — or harmful — while the problem continues to grow. There is no denying that genes contribute to health; no one is advocating throwing the baby out with the bathwater. But that’s the point: The issue of health disparities is so much bigger than a bathtub. The behemoth of American racial health inequalities leaves an excess of 100,000 Black men, women and children dead every year. This suffering cannot be explained by genetic variance between races. It is a matter of external inequity, not innate difference — racism, rather than race.

It’s not about Alford. His sentiments are noxious, but the problem doesn’t start (or end) with him. Right now, the idea that health inequities are caused by genetic racial differences is the explanation of least resistance. This dogma is endemic to the U.S. health care system and it seriously limits our approach to health inequity.

Though there is wide acknowledgement that illness is caused by a number of things — genes, environment, social conditions and their interactions — the NIH investigates only a small slice of the equation. While kids like Khiara are running out of breath, the NIH continues to chase down theories of genetic difference instead of pausing to survey (and study) a field rife with segregation, supremacy and subprime health. We need to look beyond the barrel of the microscope. This one-track mindset is costing communities who need open playgrounds and safe housing options rather than powders or pills.

Editor’s note: A version of this essay was originally published in Scientific American.

Jennifer Tsai Jennifer Tsai (14 Posts)

Writer-in-Training and in-Training Staff Member

Warren Alpert Medical School of Brown University

The white coat is a scary, scary thing, and I'm still trying to figure out if I should have one. If you like screaming about ethnic rage, dance, or the woes of medical education, we should probably do some of those fun activities that friends do.

I have few answers, many questions. Dialogue is huge. Feel free to email with questions and comments!