Moving Toward True Inclusion of Racial/ethnic Minorities in Federally Funded Studies. A Key Step for Achieving Respiratory Health Equality in the United States

A key objective of the 1993 National Institutes of Health (NIH) Revitalization Act was to ensure inclusion of minorities in clinical research. We conducted a literature search for the period from 1993 to 2013 to examine whether racial/ethnic minorities are adequately represented in published research studies of pulmonary diseases, particularly NIH-funded studies. We found a marked underrepresentation of minorities in published clinical research on pulmonary diseases. Over the last 20 years, inclusion of members of racial or ethnic minority groups was reported (in MeSH terms, journal titles, and MEDLINE fields) in less than 5% of all NIH-funded published studies of respiratory diseases. Although a secondary analysis revealed that a larger proportion of NIH-funded studies included any minorities, this proportional increment mostly resulted from studies including relatively small numbers of minorities (which precludes robust race- or ethnic-specific analyses). Underrepresentation or exclusion of minorities from NIH-funded studies is likely due to multiple reasons, including insufficient education and training on designing and implementing population-based studies of minorities, inadequate motivation or incentives to overcome challenges in the recruitment and retention of sufficient numbers of members of racial/ethnic minorities, underrepresentation of minorities among respiratory scientists in academic medical centers, and a dearth of successful partnerships between academic medical centers and underrepresented communities. This problem could be remedied by implementing short-, medium-, and long-term strategies, such as creating incentives to conduct minority research, ensuring fair review of grant applications focusing on minorities, developing the careers of minority scientists, and facilitating and valuing research on minorities by investigators of all backgrounds.