Limited Standards and Representation in Medical Research Exacerbate Healthcare Disparities

By Sheila Teker

On January 7, NBC News published an article, “Many Diagnosed with Type 2 Diabetes May Actually Have a Different Form of the Disease,” detailing the experiences of three Black women who were misdiagnosed with type 2 diabetes. It notes that the three women “wonder if their race played a role” since, “[w]ithout the correct diagnosis — which can be confirmed through blood tests — they described being denied the medicines, technology, and tests to properly treat their diabetes.” 

There is also a more concealed form of discrimination against underrepresented communities when it comes to knowledge about the body itself, and the research done to understand a disease’s symptoms and pathogenesis. 

When it comes to underrepresented populations, there is a notable exclusion of members of these communities in research. According to UCSF, “Clinical research has shown that patients’ reactions to medical treatments vary depending on race, ethnicity, and gender.” As UCSF highlighted, “Up to 75% of Pacific Islanders are unable to convert an antiplatelet drug into its active form and therefore are at higher risk for adverse outcomes following angioplasty.” This finding is from a study conducted in 2015—demonstrating how exclusion of nonwhite populations prevents researchers from obtaining knowledge that is essential for healthcare professionals working with these communities. 

There is a similar issue when it comes to the inclusion of women in research. Drugs like Ambien (zolpidem) have had to be altered in dosage when prescribed—but this only happened when there were significant disparities among users of the drugs. In this case, in 2013, “The FDA had determined that 15 percent of the 5.7 million women using zolpidem products (the active ingredient in Ambien) were experiencing driving impairment eight hours after taking the drug, compared with 3 percent of the 3.5 million male zolpidem users.” 

This is reflective of the fact that, in many cases, differences in physiology—”body size, proportion of fat to muscle, and a host of other factors, including hormonal influences,” according to Scientific American—may not be considered in healthcare practices.  Furthermore, it is essential to note that cuts in drug dosage like what happened with Ambien are considered to be only “rare example[s]” of “‘sex-specific’ medical recommendation[s].” 

And while many researchers may be knowledgeable of such differences, their studies often fail to mirror this awareness. According to Duke Health and Janine Clayton, director of the Office of Research on Women’s Health (ORWH) at the NIH, “Much of medical science is based on the belief that male and female physiology differ only in terms of sex and reproductive organs,” which has led to wet lab research focusing primarily on biologically male animal and cell models. When it comes to clinical research, women—especially those in their reproductive years—have historically been excluded due to concerns about protecting them and their fertility and/or children they are bearing. 

While these are a few rationales for the exclusion of women in these research models, the primary factor that has persisted is the belief that there is no way to control their fluctuating hormones—which result in much different research outcomes than exclusively using male models. 

The lack of representation of nonwhite populations and women also intersects, exacerbating the aforementioned disparities—and leading to less-than-optimal care in healthcare settings. 

For instance, according to Scientific American, “almost two thirds of Americans with Alzheimer’s Disease are women,” and the “APOE4 gene is more strongly linked to the disease in women.” According to the Alzheimer’s Impact Movement, “evidence from available studies shows that African Americans and Hispanics are at higher risk”—2 times and 1.5 times as likely, respectively—to develop Alzheimer’s and other dementias. Studies show that deaths from Alzheimer’s are higher for females than males who fall into the “Asian or Pacific Islander,” “Native American or Alaska Native,” “Hispanic,” and “Black” categories. This is a recurring trend for many diseases where race, ethnicity, and gender have actually been studied. 

To improve standards and accuracy of care for underrepresented communities, research and health standards must reflect differences in physiology and social determinants of health. As detailed thoroughly in a study by Bierer et. al, beyond encouraging inclusion of nonwhite populations, women, and the intersection of these two, “all clinical research results should be reported with demographic information that allows analysis of data by sex, race, and ethnicity, among other factors (e.g., social determinants of health), and with the intersection of sex by race and ethnicity.” 

If there is no effort to actively seek out and understand these differences, disparities in healthcare—and their preventable consequences—will continue to persist. 

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