Why It's Important that Minority Communities Join Research Studies

Minority Communities and Research Studies

Research has come a long way in improving how we treat diseases and how we consider various factors related to health and inclusivity. While there is still a significant gap that needs to be addressed, there is hope that, by working together, we can help close that gap.

However, research as a whole is often met with skepticism, ranging from cultural beliefs to anti-government conspiracies. While some fears can be explained or debunked, it becomes much harder to address concerns when they are rooted in issues of race and ethnicity.

Unfortunately, research has a troubling history in communities of color, including unethical practices and disastrous outcomes. This history has understandably led to mistrust toward research and the systems behind it.

Part of the issue is that many people don't fully understand what "research" actually entails. It’s important to recognize that research is an umbrella term that can encompass many different approaches and goals. You can read more about it Exploring the Role of Marginalized Communities in Research: Understanding the Impact and Position, where we dive deeper into the various types of research and what they really mean.

Minority Communities Working Together

In an ideal world, we would all be treated equally, everyone would get along, and happiness would be shared by all. But the reality is far from that. Still, our unique differences are what make us who we are, and those differences add richness and color to life.

When it comes to research, however, these differences can sometimes create challenges, especially in how we treat individuals from different ethnic backgrounds. Many people in minority communities often say, “Let someone else be the guinea pig.” But what we fail to realize is that this mindset can do more harm than good.

It’s easy to ignore research when it doesn’t affect us directly. But when it does, when it's our loved one who receives a life-changing diagnosis, that’s when we start paying attention. When someone we care about is diagnosed with a deadly illness, we desperately search for answers and solutions.

The truth is, without minority participation in research, many critical discoveries simply can’t be made. For example, in 2018, a study was conducted involving over 5,000 men undergoing radiation therapy for prostate cancer. The results showed that certain groups responded better to the treatment than others. Interestingly, it was found that Black men responded more positively to the therapy than other racial groups. While there may be other contributing factors, it’s difficult to fully understand these patterns without adequate representation in research studies. Spratt, D. E., et al. (2018). Androgen receptor activity and radiotherapeutic sensitivity in African-American men with prostate cancer: A large scale gene expression analysis and meta-analysis of RTOG trials. International Journal of Radiation Oncology, Biology, Physics, 102(3), S3.

Currently, only about 5 to 7% of Black individuals in the U.S. participate in research. This creates a major gap in our understanding of what treatments work, and don’t work, for the Black community. Jaber, N. (2024, November 15). How do Black people with cancer view clinical research? National Cancer Institute.

Minority Base Research

For some time now, there has been a more personalized approach to research and medicine. Instead of prescribing the same treatment for everyone, researchers are working to understand what works best for each individual and their unique body. A diabetes medication, for example, might work well for one person but not for another. Researchers believe this could be due to genetic differences, how our bodies uniquely process and respond to medications.

The National Institutes of Health (NIH) is supporting this effort through a program called the All of Us Research Program. This initiative collects blood and other health data to study how different people metabolize medications. While the program covers a wide range of research topics, this is one of its key goals.

The more people from marginalized communities who join these research efforts, the greater the chance we have of discovering treatments that are effective for those specific groups. Although research takes time to produce results, that’s exactly why we can’t afford to wait or leave it to others. Representation in research matters, because the answers we find may one day save lives.

Minority Communities Coming Together in Research

Before a medication can be developed and made available to the public, it must go through several phases of testing. These phases are designed to ensure that the drug is both safe and effective. One of the most important stages, in my opinion, is the human trial phase—where one group receives the actual medication and another group receives a placebo, or sugar pill. This is where we begin to truly understand how a medication works in the body.

As mentioned earlier, the effects of medication can differ from person to person and can be especially significant across different racial and ethnic groups. While science is grounded in facts and well-informed theories, it’s difficult to determine what works for all populations if those populations aren't represented in clinical trials.

In 2020, the FDA reported that 75% of clinical trial participants were white, 11% were Hispanic, 8% were Black, and 6% were Asian. Masonic Cancer Center. (2023, April 18). Minority Health Month: Why diversity is necessary in clinical trials. University of Minnesota. When you look at these numbers, it's easy to see which groups are overrepresented, and why, in healthcare, we often have a better understanding of what works for some populations than others.

While countless discoveries could be made if more people from minority groups participated in research, there’s still a lot of hesitation, and that’s exactly why I started this company. My mission is to break down barriers, address fears, debunk myths, and create new ways to educate and encourage participation in research studies.

As a Latino born to immigrant parents, I understand how intimidating the world of science can seem, especially when it’s full of complex language and misinformation. But I was given the privilege of education, the chance to ask questions, and the opportunity to learn. And so do you.

You have the power to shape your future and the future of your community. The choices you make today can have a lasting impact, not just for you, but for others. Don’t wait until an illness affects you or a loved one to start caring about finding a cure. Take action now, so someone else can spend more time with their family, and so we can all build a healthier, stronger community together.