The 1993 NIH Revitalization Act sought to encourage more diverse federally funded clinical studies. But, a team of researchers from the University of California, San Francisco and elsewhere reports in PLOS Medicine this week that less than 2 percent of the more than 10,000 National Cancer Institute-funded clinical trials met the goals for the inclusion of minorities.
"Minority enrollment in cancer clinical trials remains inadequate despite striking racial/ethnic disparities in cancer incidence and mortality," researchers led by UCSF's Esteban Burchard and Neil Powe write in their paper.
They further note that the clinical presentation of disease and response to treatment can differ with genetic variation and self-identified race. For instance, they note that some 75 percent of Pacific Islanders cannot convert the antiplatelet drug clopidogrel, or Plavix, to its active form.
"You begin to wonder, well, why is this the case? And part of that reason might be because our studies in the past have not recruited as heavily in those populations," first author Sam Oh from UCSF tells NPR.
Michael Lauer, the deputy director for extramural research at NIH, also tells NPR that some progress is being made. "[B]etween 2010 and 2014, the proportion of participants in clinical trials who are black has increased from 10 percent to 23 percent," he says.
NIH has also been seeking to ensure that its Precision Medicine Initiative cohort is diverse.
Oh, Burchard, Powe, and their colleagues offer a few additional suggestions in their paper to build on current efforts. For instance, they call for increased overall funding for NIH, more diverse grant review committees, including minority recruitment as metric for gauging a study's scientific merit, and enabling the agency to set and enforce requirements for minority recruitment, as it does for gender balance.
"Diversity in science is science done well," Oh adds in a statement. "You need diversity in the research, diversity in who is being studied and diversity in the people doing the science. Otherwise you become an echo chamber — everyone looks and sounds just like us."