Minority Health: Reducing Research Disparities

Early this year, the National Institute on Minority Health and Health Disparities released a special issue of the American Journal of Public Health, New Perspectives to Advance Minority Health and Health Disparities Research, that is the result of a two-year science visioning process designed to "chart a new research course to improve minority health and reduce health disparities." Despite decades-long efforts to reduce minority health disparities in groups such as racial and ethnic minorities, socioeconomically disadvantaged populations, underserved rural populations, and sexual and gender minorities, they persist.

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The FDA, which includes the Office of Minority Health and Health Equity (OMHHE), is now working to reduce disparities in clinical trials. Racial and ethnic minorities continue to be underrepresented but are disproportionately affected by disease. "The disparities in health span everything from cancer and diabetes to heart disease, sickle cell disease, and HIV/AIDS. The FDA's work on these issues is a priority—and is intrinsic to the work we do across the agency," stated the authors of a recent blog post from several members of the OMHHE.

The Agency has issued guidance on the collection of race and ethnicity data in clinical trials, and has created a Minorities in Clinical Trials Initiative that will offer resources to help promote patients' understanding of the benefits of clinical research. It also continues work with other groups to discuss clinical trial endpoints for minority health diseases, such as sickle cell disease.

Other groups are moving along a similar path. A four-year, $2.8 million multi-institutional study, funded by the National Human Genome Research Institute, has been launched in order to understand the barriers to minority group participation in genetic studies and to support the creation of policies and approaches that will help build a diverse genetic database. The genetic profiles used in precision medicine are disproportionately based on genetic contributions from the white population. However, diseases can present differently among ethnic groups. The study will explore how centers recruit participants and collect, measure, and share data; and how they communicate their findings that may have unintended consequences.

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Stephanie Jones