According to a newly released report to Congress from the National Academies of Sciences, Engineering and Medicine, urgent action is needed to address the underrepresentation of women and racial and ethnic minority groups in clinical trials and research. While there is progress noted in the report on the inclusion of more white women in research, much more work is needed to improve representation.
Why is this important? The newly published report specifically highlights the following risks of underrepresentation:
- Lack of access to effective medical interventions as novel therapies are typically limited to the populations studied in the underlying clinical trials
- Compounds existing disparities in underrepresented groups
- Costs billions of dollars in lost life expectancy, being able to live a disability free life and reduced years in the labor force.
At a minimum, federally funded research should be reflective of our diverse population. We wrote an earlier post about a similar gap in sports science & medicine research, specific to women. One of the prevailing myths is that underrepresented groups just don’t want to participate in research. This was refuted in the new report as it turns out, they just need to be asked.
We encourage you to read the new report (it’s free to read online) and reach out to your congressional representative(s) to ask them to review the report in detail and to take the recommended actions laid out in the report which include changes to the NIH, FDA, Institutional Review Board and Journal review processes, among other recommendations. Representation really does matter.
References
National Academies of Sciences, Engineering and Medicine. 2022. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington, DC: The National Academies Press. https: doi.org/10.17226/26479
