Despite Congressional directives for 30 years to diversify clinical research, the number of studies that include minorities and the diversity of scientists being funded have not improved, according to a new analysis
published in PLoS Medicine
Researchers compiled 30 years of raw data regarding the percentage of clinical studies that include racial and ethnic minorities. The data included funding for research by non-white scientists and 2 decades of analyses from the National Institutes of Health (NIH).
The researchers found that out of more than 10,000 cancer studies, only 2% studies have included enough minorities to make the conclusions relevant. Additionally, less than 5% of NIH-funded respiratory research programs included ethnic minorities. A separate study showed that scientists from minority communities—who can also help in reaching out to the study participants—are consistently less likely to receive NIH funding. These findings have persisted despite the 1993 NIH Revitalization Act, which mandated all federally funded clinical research programs to prioritize the inclusion of women and minorities.
The Need to Study Diverse Groups
Most scientists rely on research deduced from a largely homogeneous population, usually white and male. The study asserts that this lack of variety in research programs could have negative consequences on our ability to care for the nearly 40% of the current US population whose heritage includes non-European races. It is critical to address this gap because according to forecasts, the proportion of minority residents will exceed 50% by 2044.
The study finds that race/ethnicity and ancestral background can strongly influence disease patterns, clinical presentations and remedial response. While every study doesn’t need to consider genetic variation, at least clinical and biomedical research should include these variations to derive meaningful results. For example, up to 75% of Pacific Islanders are unable to convert the antiplatelet drug clopidogrel into its active form putting them at a higher risk for adverse outcomes after angioplasty.
Minorities Are Under-Studied
The enrollment of minorities in cancer clinical trials remains lacking despite striking racial/ disparities in cancer incidence and mortality. The same is true for minority representation in research for cardiovascular diseases and diabetes.
While some NIH reviewers have argued that including diverse groups might increase the financial costs, not including them has greater financial consequences. For instance, bridging the disparity gap would have cut down medical costs by more than $1.2 trillion during 2003-2006. It is a question of short-term expenses versus long-term economic benefits.
Understanding the Hurdles to Diversify Research
Inadequate access to specialty care centers and fear of being exploited in medical research are some of the most-cited barriers to research diversity.
The study cites other barriers such as lack of access to information, not fully understanding the scope of the research, cultural and linguistic differences, insufficient time, inadequate funds, fears of unintended outcomes, stigmatization, and healthcare discrimination.
It is imperative that funders, academic institutions, investigators and potential research participants all get together in this effort to bridge the gap in research diversity.