Less than 5% of the studies on lung diseases funded by the National Institutes of Health (NIH) over the last 2 decades have included a statistically significant number of participants from racial or ethnic minorities, concludes a new analysis. The discovery highlights the continuing difficulty of adequately represent minorities in biomedical research, the authors say, but they argue that the problem could be solved by a number of steps.
responsibleNIH does not dispute the results, but note the focus of the results published survey may underestimate the ongoing efforts of the agency to improve the representation of minorities in research clinical and other studies.
the new survey, published last month in the online American Journal of Respiratory and Critical Care Medicine , examined the respiratory disease studies published between 1993 and 2013. A search of PubMed found 58.0 studies that reported the NIH funding. Among them, in 2534 4.4%-studies reported by police that minorities represented 25% or more of the population studied. Below the 25% participation threshold, it may be difficult for the statistical analyzes to detect racial or ethnic differences in risk factors or the effects of the disease, the authors write, directed by a physician-scientist Esteban Burchard the University of California, San Francisco.
during the period of 20 years, the inclusion of minorities has increased slightly from just over 2% of studies in 1993 to almost 5% 2013, the study found. During the same period, the authors note, the proportion of people in the US who identified as part of a group of racial or ethnic minority rose from 26.5% to 38.9%.
Since "The results are worrying that we know many lung diseases disproportionate impact on minorities underrepresented," says Patricia Finn, a pulmonologist at the University of Illinois, Chicago, and outgoing president American Thoracic Society. (Finn was not involved in the study.)
the study is the latest in a long line to focus on minority representation in research clinic. last year, for example, a similar review of cancer studies funded by the National cancer Institute found that less than 2% focused on minorities. in 1993, Congress directed NIH to strengthen its efforts to recruit more minorities in studies funded by the federal government, and the agency has since launched a range of efforts, including programs to recruit Latinos and African Americans in the asthma studies.
the new investigation can not fully grasp these efforts, officials NIH say, because all studies have published results. "The analyzes that focus on selected publications can not ... fully reflect the inclusion of all persons enrolled in studies supported by the NIH," wrote a representative for the Office of NIH research extra- muros Science Insider in an email. The agency said that in 2013, approximately 30% of all clinical research, he financed included a minority interest.
The efforts to fully represent minority populations in biomedical research are becoming increasingly important as new or "precision" "customized" approaches are being developed, researchers say. Approaches aim to use genetic characters and other specific of each person to develop appropriate treatments, and "to harness the power of this science, we must include everyone," says Finn.
better representation also allows researchers to understand the disparities in disease rates among different ethnic groups, said the study authors. studies have shown that African Americans are more likely to develop certain forms of chronic obstructive pulmonary disease after smoking than whites, for example. They are also more likely to die from lung cancer.
health disparities are particularly glaring in asthma, according to Burchard. the asthma is the most common chronic disease among children, affecting about 26 million people in the United States. the prevalence is higher among Puerto Ricans and African Americans than among non-Hispanic whites, other Hispanic groups or Asian. Black children with asthma are four times more likely to die from the disease than white children with asthma, according to studies.
The environmental and socio-economic factors play a role, but so does the descent. In a previous study, Burchard and his colleagues found that a gene mutation linked to the severity of asthma was 40% more common in African Americans.
Even the effectiveness of treatment can vary according to race or ethnicity. For example, albuterol, medication against asthma most commonly prescribed, is less likely to work in African Americans and Puerto Ricans than among whites. "Ethnicity is the only predictor of response to albuterol," said Burchard, who helped start two major asthma gene-environment studies among minority children in the United States. (Studies are known as GALA, or the genetics of asthma among Latino Americans, and SAGE, or the study of African Americans, Asthma, Genes, & environment.)
Burchard and his team say a number of factors contribute to the underrepresentation of minorities in studies funded by NIH. They include a lack of training on how to conduct inclusive education, a lack of incentives to implement inclusive education, the relatively low number of minority scientists, and "a lack of successful partnerships between academic medical centers and underrepresented communities. "Addressing the problems systematically, they suggest, could help change the numbers.
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