The Danger of Inequality in Invisible Institutions
The University of Minnesota Medical School. Photo by Alexander Gude.
When Ahmaud Arbery’s murderers, Gregory and Travis McMichael, were finally arrested months after they shot him while he was on a jog, Arbery’s family’s lawyer, Benjamin Crump, took to the news not with a statement of triumph but rather one of caution. “I want to make it clear for the record,” he told NPR. “The reason they arrested Travis and Greg McMichael for executing Ahmaud Arbery was not because the law enforcement officials saw the video; it was because we the people saw the video.”
The aforementioned statement spread quickly on social media, serving as a testament to the power of public outrage and as a glaring reminder to hold institutions and state empowered organizations like our police departments accountable. After all, if the past couple of weeks have proven anything, it’s that our scrutinizing eyes and our collective rage are unfortunately far too necessary in ensuring justice for marginalized populations. It’s with great urgency that the public ought to reflect and consider, then: are there perhaps other institutions with a similar power to impact our livelihood that we are leaving unchecked?
A disconcerting revelation about a 1986 clinical study points towards an unlikely potential answer to this question: the medical research community.
Thirty-four years ago, scientists at the University of Minnesota discovered a treatment with the potential to save the lives of millions of African Americans suffering from heart failure. Unfortunately, they didn’t realize this fact until over a decade later. The scientific community disregarded the treatment as ineffective for thirteen years, until finally in 1999, researchers from Washington D.C. studied the trial more closely. It turned out that the original experiment included so few African Americans that their positive reaction to the treatment went unnoticed. As a result, incalculable numbers of people lost their lives to an entirely treatable disease, all because the original experiment had a study group composed almost entirely of white men. There were no ensuing protests or demands of reparations. How could there have been outrage, after all, when no one was watching in the first place?
In recent years, scientists have enjoyed relative immunity from the public eye. A recent poll conducted by The Pew Research Center found that 86% of the public has either a fair amount or a great deal of faith in biomedical scientists. When asked about their trust in the government, though, only 17% of the public indicated confidence in those running the country. The results match what is a generally understood public sentiment: we trust our doctors since they’re “smart” and “good,” but we warily monitor our elected officials, often deemed to be “dishonest'” and “sly.” This discrepancy in public perception is so widespread that the underlying logic is hardly ever questioned. But perhaps it should be. After all, when the likes of racism and sexism are generally considered to pervade society as a whole, should we be assuming that the scientific community is immune?
A paper titled “Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled” suggests that we should not. According to the report, less than two percent of the cancer clinical trials conducted since 1993 have “included enough minority participants to meet the N.I.H.’s own criteria and goals.” As a result, treatments for this devastating disease are tailored to the body of a white man and hastily generalized to the rest of the population. These low percentages suggest that the exclusion of racial minorities from medical studies is a pervasive problem, not just a one-off error. The root cause is often cost.
Admittedly, studies with diverse patient groups are likely to be expensive given the extra time that researchers spend recruiting participants. As a result, researchers (especially those in labs pressed for resources) begin to indirectly discourage the inclusion of minorities in clinical studies.
However, discrimination is direct more often than not. Dr. Sandra Underwood of the University of Wisconsin explains that one way this occurs is by perpetuating stereotypes of marginalized groups as being “noncompliant, unreliable, and unwilling” study participants. By negatively characterizing minorities in this manner, researchers rationalize their homogenous study groups by arguing that, if minority individuals don’t want to participate in research studies, they shouldn’t be forced. The result is a body of research focused on maintaining and improving the health of only one population.
The medical research community exhibits the same patterns and problems that many institutions in our country do. Just as our police departments and our justice system often turn a blind eye to the violence perpetrated against Black and brown people, the medical institutions in our country continue to disregard their health. What makes the latter’s discrimination even more insidious, though, is its relative invisibility: there are no viral videos that we the people can spread to highlight the injustice of doctors overlooking minority participants when performing their studies.
Thankfully, we can change this. To do so, we first have to recognize that science is institutional—research is conducted through universities, organizations, and foundations, not a scattering of doctors working independently of one another. These are structures capable of perpetuating the institutional problems that still persist in our society. By reimagining the field of medical research as an establishment with the power to either hinder or help social justice and equality, we can subject it to the same sort of public oversight that we do other institutions, whether that be by spreading information about research groups that consistently ignore Black and brown people or by donating to organizations that fund grants for scientists studying minority-specific health issues. It’s in our power to ensure that everyone in our country benefits from the scientific and medical advancements that can save their lives; all we need to do is start watching.
Shruti Verma is a rising sophomore in the School of Engineering and Applied Sciences planning on majoring in Computer Science and double minoring in Econ and Political Science. Though a STEM nerd at heart, she has a passion for probing the intersection of public policy and the sciences. In her free time, she enjoys watching basketball and reading historical fiction novels on sunny SoCal beaches.
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