Diversity in Medical Research Is a Long Way Off, Study Shows
From the article by Kristen Bole on the UCSF News:
Despite Congressional mandates aimed at diversifying clinical research, little has changed in the last 30 years in both the numbers of studies that include minorities and the diversity of scientists being funded, according to a new analysis by researchers at UC San Francisco.
That lack of diversity could have a serious impact on our ability to care for the nearly 40 percent of the current U.S. population whose heritage includes non-European races, the authors said, and will increase in urgency as the proportion of minority residents exceeds 50 percent in 2044.
The commentary, which was published Dec. 15 in the Policy Forum of online scientific journal PLoS Medicine, compiled 30 years of raw data on funding for research by non-White scientists, as well as two decades of analyses from the National Institutes of Health (NIH) and others regarding the percentage of clinical studies that include racial and ethnic minorities.
They found that since the 1993 NIH Revitalization Act, which required all federally funded clinical research to prioritize the inclusion of women and minorities, less than 2 percent of the 10,000-plus cancer studies have included enough minorities to be relevant, and less than 5 percent of respiratory studies have. A separate Freedom of Information Act request also showed that the people best able to reach minority study participants – scientists from those communities – are consistently less likely to receive NIH funding, in terms of the percentage of their grants that are funded. Both the challenges and solutions are multifactorial, they said, but not insurmountable.
“This country is plagued by racial and ethnic disparities in some of the deadliest and most debilitating diseases, including cancer, cardiovascular disease, diabetes and asthma,” said co-senior author Esteban González Burchard, MD, MPH, a pulmonologist and professor of bioengineering and therapeutic sciences in the UCSF schools of Pharmacy and Medicine. “The only way we will make progress in decreasing that burden of disease is by understanding why it occurs. And we can’t understand that without including diverse communities in our research.”
Those disparities also have economic consequences: The paper cited research showing that from 2003 to 2006, alone, racial and ethnic health disparities increased U.S. medical costs by more than $1.2 trillion.
“Increasing diversity is also a worthwhile effort scientifically,” said first author Sam Oh, PhD, MPH, an epidemiologist and researcher in the UCSF Center for Genes, Environment and Health. “We can’t divert our resources knowing that an intervention is only going to work on a small portion of the population. By understanding that population, we can target our resources effectively for everyone. But we’ll only learn that by having study populations that represent everyone.”
The paper cites a number of medications that are known to affect people differently based on their genetic backgrounds, including the blood thinner clopidogrel, which is prescribed to reduce stroke risk after angioplasty, but is ineffective in the 50 percent of Asians who lack the enzyme to activate it. Other examples include the epilepsy drug carbamazepime, which is deadly to Asians who have the gene HLA-B*1502, and the asthma drug albuterol, which has a lower response rate among African-Americans.
Read the full article.