A groundbreaking report from the National Academies of Sciences, Engineering, and Medicine reveals that the underrepresentation of racial and ethnic minorities in clinical trials is not only exacerbating health disparities but also costing the United States hundreds of billions of dollars. The study, mandated by Congress, calls for urgent action from federal agencies, including the NIH and FDA, to improve diversity in clinical research.
The report highlights that while progress has been made in representing White women in trials, participation from racial and ethnic minority groups has stagnated over the past three decades. This lack of representation has serious consequences, potentially limiting access to effective medical interventions for underrepresented populations and reinforcing existing health inequities.
Dr. Kirsten Bibbins-Domingo, chair of the committee that authored the report, emphasized the critical nature of this issue: “As the U.S. becomes more diverse every day, failing to reach these growing communities will only prove more harmful and costly over time.”
Contrary to common assumptions, the report found that distrust is not the primary barrier to participation. In fact, evidence shows that Asian, Black, and Latinx Americans, and American Indian/Alaska Native individuals are often more willing to participate in research when asked.
The committee’s recommendations include requiring detailed recruitment plans from study sponsors, incorporating representativeness into grant proposal evaluations, and establishing new incentives for trials that achieve representative enrollment. Journal editors are also urged to consider trial representativeness in their publication decisions.
“All stakeholders in the research enterprise must take committed and accountable actions in order for our country to have a diverse, inclusive clinical research portfolio,” stated Victor J. Dzau, president of the National Academy of Medicine.
