National Academies Study Addresses Lack of Diversity in Clinical Trials and Research

The National Academy of Sciences, Engineering, and Medicine (NASEM) recently released a report on diversity in clinical trials and research. The consensus study report, Improving Diversity Across the Clinical Trial and Research Ecosystem examined data from various organizations, including the National Institutes of Health, and found, generally, a significant lack of data on diversity on clinical trials. The report cites the lack of standardization of demographic data collection across organizations as a barrier to accessing this type of information. 

The report details the current atmosphere around clinical trials and research, and the lack of diversity within them, which can lead to dangerous generalizations, high failure rates, and lack of equitable access to medical care. It identified several barriers that prevent minorities and underrepresented communities from participating in clinical trials and research, citing that institutional and economic barriers, including research and industry funding, contribute significantly.

The report contains 17 recommendations, including that the Department of Health and Human Services (HHS) develop a subcommittee dedicated to improving accessibility and transparency of this data. Further, this subcommittee should produce annual reports on diversity in clinical trials and research for Congress.

The report further recommends creating Federal incentives for clinical trials and research and guidelines on fair compensation to reduce economic barriers and encourages development of a diverse workforce in the clinical trials and research.