Clinical research is one of the most important — and least openly discussed — cornerstones of medicine. This type of research enables scientists to develop new medications, cures, and preventative measures for some of the most difficult diseases facing the human race today. Likewise, clinical trials give scientists an avenue to test new treatments and determine their safety and effectiveness before they go to market and are distributed to the masses.
As great and important as clinical research is, it certainly isn’t free from its fair share of sticky problems. Perhaps one of the most pressing issues in clinical research today is a significant lack of equal representation in clinical trials. The vast majority of clinical research is tested on middle-aged white men, meaning that the side effects of certain treatments on minorities and occasionally even women are pretty unknown. There are a plethora of reasons for this lack of representation. For instance, research studies typically focus on those who volunteer to participate. Historically, many clinical trials involving minorities crossed clear ethical boundaries, which has led to continued widespread distrust of the system.
Lack of Inclusion in Clinical Trials
Unfortunately, minorities have typically been left out of clinical studies altogether. Outside of a few notorious — and disturbing — examples of minority-focused clinical research, most studies have long been predominantly white — upwards of 80-90% white.
Part of this is because rigorous scientific experimentation has long required limiting the number of variables or demographic differences amongst test subjects. Doing so makes it easier to clearly prove that the medication is what is making the difference in outcomes. The obvious negative to this type of research is that once a medication hits the market, it will be recommended to thousands of patients of different ethnicities — many of which the medication was never rigorously tested on in the trial phase.
Congress took a step in the right direction in 1993 with the passage of the National Institutes of Health Revitalization Act. This required the agency to include more women and people of color in their medical research studies. Fast forward to the era of COVID-19 and most ethnicities were represented in medical trials in a proportionately appropriate way. That is, except African Americans.
Lack of Trust
There is no mistaking that a lack of trust in the health care system and in medical research is a significant part of why these disparities exist. In reality, this distrust is completely fair. There are plenty of examples of unethical medical testing throughout history. Some of the most notable ones include the Tuskegee Syphilis Study, where black men were deliberately left untreated for syphilis, or the Plutonium Trials, where participants were given injections of plutonium without an adequate explanation of the risks.
Today, many people argue over the ethics of cutting-edge research studies into things like nootropics or stem cell research. However, even some of the most common research studies lack willing minority participants. For instance, in many cancer studies, medical researchers struggle to garner interest in many minority patients.
The most heartbreaking aspect of this phenomenon is that participating in this type of research may be what saves the lives of many other minority patients in the future. Oftentimes racially and ethnically diverse patients suffer from health issues disproportionately to their populations. Recruiting for studies can be difficult because many do not have access — due to finances or other resource availability — to treatment facilities where the studies are taking place.
Breaking Down Barriers in Clinical Trials
The need to break down these barriers is immense. Not only can including more minorities in medical research studies produce better results for the entire population, but it can save lives in the long run. So the question then becomes — how do we start to break down these barriers and build more trust?
For many medical experts, the answer lies in building a relationship with patients. Earning the trust and respect of a patient through conversations and getting to know them as an individual is important. Even on a very basic level, they have to trust that a medical professional truly has their best interests at heart and cares about them as a real person.
One study examining how health care providers could encourage greater minority enrollment in clinical trials indicated a few options such as:
- Emphasizing the importance of personalized medical trials to increasing knowledge of how certain diseases and treatments impact minorities.
- Improving access to medical information and trial opportunities at the local hospital level.
- Expanding upon minority representation in healthcare career paths.
- Providing educational materials that can help patients better understand the goals of medical research.
The value of medical research cannot be understated. However, there is a chronic lack of minority representation in the majority of clinical trials. Breaking down barriers that lead to a lack of inclusion and distrust in the system are important to improving the health of all patients. As a minority nurse, it is possible to play a pivotal role in starting to break these barriers down.