Tu voz, tu salud, tu communidad: Empowering Latinos to Shape the Future of Medicine Through Clinical Research

Written By Ulises Marin

Written By: Simran Gupta

Empowering Latinos

When it comes to advancing the field of medicine, the voice of every single community matters, and that includes la comunidad Latina.

Clinical trials have been and continue to act as the foundation of modern medicine. They allow researchers to discover what kinds of new drugs, devices, and therapies work, why they work, and for whom they work for.

The results of these clinical trials should be beneficial for us all, and yet the Latino population continues to be underrepresented in this important research, resulting in nuestra diversidad not being fully represented in the field of medicine.

Latinos make up nearly 20% of this nation’s population, but less than 7% of us participate in clinical trials, aka the research that shapes our healthcare. That means our future healthcare isn’t being tested for us.

The Latino population is unique in physical and genetic makeup, so if we aren’t included in clinical research, then we can’t understand how newly developed drugs and therapies work in las personas Latinas.

More Latino participation in clinical trials can ultimately lead to a better understanding of specific conditions that affect the community, safer and more effective treatments, and increased health equity and inclusion as a whole.

We can’t discuss increasing Latino participation in clinical trials without addressing the history and stigma behind it. Dr. Amelie Ramierz, DrPH, MPH, director of the Institute for Health Promotion Research at UT Health San Antonio said, “Our community feels at clinical trials that they’re being tested as guinea pigs”, and this is definitely not wrong.

Clinical research has a reputation of not being the most transparent field of study for those individuals participating, and this has created a sense of mistrust between the Latino population and the world of clinical research.

According to the Centers for Disease Control and Prevention (CDC), Latino people have experienced various forms of discrimination and harm from the very healthcare system that is meant to protect and improve health and well-being.

Things like language barriers, not getting the care they need, feeling judged or overlooked, dealing with stress and even the biases that people don’t realize they have play a role in creating this feeling of uneasiness when it comes to Latino participation in clinical research.

Let’s be real, the history isn’t pretty, but things are changing. There are a lot of protections in place for clinical research participants, making sure they give their full consent and are safe, creating a much-needed sense of transparency when it comes to clinical research.

Every clinical research study is checked by a team to make sure it’s safe – it’s called the Institutional Review Board, or IRB for short. The IRB’s job is to look at a study and make sure it is ethical and safe for the people taking part before the study even begins.

The IRB makes sure that anyone who participates in a clinical study gives consentimiento informado, so you know exactly what is happening and which allows you to leave a trial at any time.

Still, we know that confianza must be earned. When it comes to participation in clinical trials, you are in control – punto. Here’s how you can make an informed decision when deciding to participate in clinical research:

Learn about the study. Ask questions. Ask all the questions.

Some questions that could be beneficial to ask include:

  • What is the purpose of the study?

  • What are the potential risks and benefits?

  • Who is funding the trial?

  • How will this research benefit my community?

Ask for any materials in Español (or other preferred language).

Bring a trusted friend or family member with you.

Understand that you have the right to leave at any time.

Latino participation in clinical research is about giving a voice and empowering your community; participating in clinical trials allows you to shape the future of healthcare for your people. The results of this research has the potential to create healthier lives for generations to come para todos.

As stated by Dr. Mayra L. Estrella, professor at UTHealth Houston School of Public Health, “It absolutely does help. Without participants, we don’t know anything. More Hispanic volunteers in clinical trials can really make a difference”.

Be a part of the change. Ask about clinical trials. Share this with someone who cares and wants to get involved. Nuestra salud y nuestro future depends on it.

Sources:

Ulises Marin
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