Growing up, I always questioned why I’d be going with my grandmother to my great aunt’s house to administer medication, multiple times a day. What was this medicine doing? Why did she need it? It wasn’t until well into junior high, that I learned the significance of the medication that she was taking. And how it kept her alive. Learning how medications were made, through clinical trials, set me on my future path. I am now a champion of diversity, equity, and inclusion in clinical trials. Let me tell you why.
Clinical trials are essential for the development of new drugs and medical treatments. However, they have historically suffered from a lack of diversity, equity, and inclusion. This has led to an underrepresentation of certain populations in clinical research. Which in turn has had negative consequences for the health of these populations. The Tuskegee Syphilis Experiment and the story of Henrietta Lacks are examples of how systemic racism and mistreatment in healthcare have caused distrust in marginalized communities. Particularly in communities of color.
As someone who grew up in an underserved population, I have personally witnessed the distrust that exists when it comes to clinical trials. My grandmother, for instance, did not even understand the medical terminology her physician was using. This is a great example of why we need to meet patients where they are at. Health disparities have plagued underserved populations for years. And addressing these disparities requires a concerted effort to ensure that clinical trials are diverse, equitable, and inclusive.
Breach of trust
The Tuskegee Syphilis Experiment is one of the most well-known examples of mistreatment in clinical research. From 1932 to 1972, the U.S. Public Health Service conducted a study on the natural progression of untreated syphilis in African American men in rural Alabama, without their informed consent. The study continued even after penicillin became the standard treatment for syphilis. This experiment caused significant harm to the participants and their families, and it has understandably created a deep sense of mistrust in the African American community towards clinical trials and healthcare in general.
Henrietta Lacks is another example of how mistreatment in clinical research has created distrust in marginalized communities. In 1951, Lacks, an African American woman, had cells taken from her without her knowledge or consent. Her cells, known as HeLa cells, were later used in countless medical breakthroughs, including the development of the polio vaccine. However, her family was not informed about the use of her cells until decades later. This lack of transparency and consent led to skepticism and mistrust in the medical community, particularly in communities of color.
Recognizing inequities to move forward
It is crucial to acknowledge and address these past injustices if we want to create a more equitable future for clinical trials. We, as clinical research professionals, have a responsibility to ensure that research is diverse, equitable, and inclusive. This means actively recruiting participants from underrepresented populations, providing language and cultural support, and ensuring that informed consent is truly informed and understood.
To ensure we continue taking steps in the right direction, the FDA recently mandated that all clinical trials must have diversity action plans. This mandate requires companies to report on their efforts to increase diversity in clinical trials and to identify any barriers that prevent participation from underrepresented groups. Although it won’t solve the entire problem, it will light a fire that will impact so many and change the way that we think when designing trials and how we are inclusive of all populations.
Diversity, equity, and inclusion in clinical trials
The lack of diversity, equity, and inclusion in clinical trials is a significant problem that must be addressed. The mistreatment of marginalized communities in past clinical research has created understandable distrust. And it is up to us to build trust and promote equity in the future. By acknowledging and addressing these past injustices and committing to diversity, equity, and inclusion in our clinical trials, we can ensure that everyone benefits from the advances in clinical research as we march forward.
Addressing the lack of diversity, equity, and inclusion in clinical trials is not only a moral imperative but also a crucial step towards advancing access to healthcare for everyone everywhere. I am proud to be part of an organization that is dedicated to transforming the clinical research landscape. By leveraging cutting-edge technology and innovative solutions we drive greater inclusivity and diversity. Through our collective efforts, we can create a future where clinical trials are accessible, equitable, and inclusive for all. And where healthcare outcomes are no longer determined by one’s race, gender, or socioeconomic status. I am excited about the progress we are making. And I am honored to be part of this transformative journey at Datacubed Health.