Are Minority Children Under- or Overrepresented in Pediatric Research?
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* Pritzker School of Medicine, University of Chicago, Chicago, Illinois
Department of Pediatrics, University of Chicago, Chicago, Illinois
MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois
Objectives. There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents.
Methods. All full-length articles published in the paper edition of 3 general pediatric journals between July 1999 and June 2000 were collected and reviewed. Articles were excluded when they did not include at least 1 US researcher, all subjects at US institutions, parents or children as subjects, some prospective data collection, or between 8 and 10 000 subjects. We recorded the number and race/ethnicity (R/E) of all subjects, the type of research, and the type of data collected. Corresponding authors were surveyed to clarify R/E data.
Results. A total of 192 studies qualified. R/E data were reported in 114 (59%) studies, and survey data provided additional or new information in 25 studies resulting in R/E data in 128 (67%) articles accounting for 75% of the subjects. R/E was described by >10 different labels. There was an overrepresentation of black subjects and an underrepresentation of white and Hispanic subjects compared with the census data. When compared with research participation of child subjects, generally, black children were overrepresented and Hispanic children were underrepresented in clinical trials, and both were underrepresented in therapeutic research. Black and Hispanic children were overrepresented in potentially stigmatizing research.
Conclusions. Overall, we found an overrepresentation of black subjects and an underrepresentation of white and Hispanic subjects with significant variations depending on the type of research.
Key Words: race • ethnicity • research subjects • research
Abbreviations: NIH, National Institutes of Health • R/E, race/ethnicity • PSR, potentially stigmatizing research
Received for publication Dec 17, 2002; Accepted Mar 31, 2003.
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