America is an increasingly diverse place. In fact, by recent estimates, over 40 percent of the American population belong to a racial or ethnic minority. Despite this, however, clinical trials tend to be much more racially exclusive.
“In short: clinical trials are too white,” writes NPR‘s Rae Ellen Bichell.
According to the U.S. Department of Health and Human Services, clinical trials are research studies that explore whether a medical treatment, intervention, or device is safe and effective for humans. These studies show which medical approaches might work best for certain illnesses or groups of individuals.
“The work conducted by the public health sector is largely focused on assessing health problems and risks on a local, regional, national, and global scale,” write the education experts at Find Your Context. “Those working within this sector look to create policies and strategies that can help to solve or alleviate health problems and prevent epidemics from occurring.” But what happens when those health experts don’t have a complete sample of the population?
When subjects in clinical trials don’t reflect the actual population of people that may be using these treatments for their medical care, problems can arise. So what exactly are the consequences of clinical trials lacking diversity?
“We’ve known for years that certain drugs don’t work on parts of our population,” Sam Oh, an epidemiologist at the University of California, San Francisco Center for Genes, Environment and Health told Bichell in 2015. “Only 2 percent of cancer studies and less than 5 percent of pulmonary studies have studied enough minorities to provide useful information.”
Because of genetic differences such as these, some people’s bodies might process drugs and treatments in different ways.
“African-Americans and Puerto Ricans don’t respond as well to some of the most common asthma controller medications, and that’s really a tragedy since these two groups are the most affected by asthma in the United States,” Oh cites as an example. But this is only one of many oversights in the medical testing community.
There are a number of diseases that disproportionately affect minority communities that are not actively being tested on those populations. As a recent Forbes article points out:
- African-American men are twice as likely as their white counterparts to die from prostate cancer but represent only 4 percent of clinical trial participants.
- Suicide is a leading cause of death among Asian-American women under 45 years of age. Despite this, Asian-Americans constituted less than 1 percent of trials for CDER-approved treatments of major depressive disorders..
- Cancer is the leading cause of death among Hispanics, yet Hispanic cancer patients only make up 4 percent of participants in cancer clinical trials in the U.S.
As a result of this lack of testing on individual ethnic populations in clinical trials, researchers have a harder time coming up with effective solutions that might help those populations.
“The pandemic this lack of knowledge represents is having an immediate and negative impact on the country’s healthcare system,” writes Sujay Jadhav of the Forbes Technology Council. “Without accurate data, doctors cannot prescribe drugs and other treatment options for diseases that affect their minority patients. Without access to effective (and less expensive) preventative drugs they can take at home, these patients will be unable to prevent their health from deteriorating. More will end up in hospitals to undergo much more extensive courses of treatments. Those patients without health insurance will require tax dollars to cover those costs that potentially could have been avoided altogether.”
But why are minorities so tragically underrepresented in biomedical research?
The reasons, experts argue, are varied. Minority populations may live in areas where access to speciality care centers are limited. There have also been a number of cases in which minorities have been subjected to exploitation during medical research studies. Others see the lack of diversity in medical staff as reason to distrust the system as a whole, though rates of medical student diversity are on the rise.
“There have been some bad experiences — some very bad experiences — which have appropriately led people in minority communities to have less trust in the research environment than they otherwise might have,” Dr. Michael Lauer, who oversees grant applications at the National Institutes of Health told NPR.
He also argues that things might be looking up, as in recent years there have been a few examples of minority representation in medical testing.
There’s still a lot of work to be done, however. As medicines become more precise and tailored to individual genomes, increasing the populations of minorities in clinical trials will become even more important. For those directly involved in these industries, it’s imperative that they throw their full support behind diversity and inclusion in order to increase the benefits to public health overall.