Distrust of medical research appears more common among African American parents than white parents and may present a barrier to enrollment of minority children in research studies, according to a report in the February issue of Archives of Pediatrics & Adolescent Medicine, one of the JAMA/Archives journals.
The inclusion of ethnic minorities and children in research helps ensure that results can be applied to the general population, according to background information in the article. The National Institutes of Health have mandated that researchers include representatives of these groups. However, African Americans frequently remain underrepresented. "African Americans' distrust of medical research has been suggested to be an important reason for their lack of participation," the authors write. "This distrust may be attributed both to a cultural memory of victimization and exploitation during clinical experiments, such as in the Tuskegee Syphilis Study, and to personal experiences with discrimination."
Kumaravel Rajakumar, M.D., of the University of Pittsburgh School of Medicine and Children's Hospital of Pittsburgh, and colleagues surveyed 190 parents (140 African American and 50 white) who accompanied their children to a primary care clinic between August 2004 and April 2005. In addition to demographic characteristics, participants were asked about their attitudes toward their child's medical care, beliefs about medical research and whether incentives (such as money or free medical care) would affect their decision about allowing their child to participate in research.
As compared with white parents, African American parents:
- More often reported distrust of medical research, when questions assessing trust were combined and analyzed (67 percent vs. 50 percent)
- More often believed that physicians prescribe medications as a way of experimenting on unknowing patients (40 percent vs. 28 percent)
- Were more likely to believe that medical research involves too much risk to the participant (46.8 percent vs. 26 percent), that physicians will not make full disclosures regarding their child's participation (24.6 percent vs. 10 percent) and that research participants would be favored and receive better medical care (48.6 percent vs. 28 percent)
Education level was also associated with distrust, with high distrust scores among 74 percent of those with less than a high school education vs. 44 percent of college graduates. However, race remained associated with higher levels of distrust even after the researchers controlled for education, with African American parents having two times the odds of being distrusting compared with white parents.
"Although the overall attitude toward medicine and research was positive in both African American and white parents, the degree of distrust was significantly greater among African American parents," the authors write. "Our data suggest that African American parents with higher levels of distrust are less likely to enroll their children in clinical research. Additionally, traditional incentives (financial compensation and free medicine, transportation and medical care) did not overcome the barrier of high distrust."
"Strategies for overcoming the distrust in medicine and research among African American parents are warranted to ensure adequate representation of African American children in clinical research," they conclude. These strategies might include culturally appropriate recruitment materials, use of research assistants with similar racial and cultural backgrounds and the establishment of community research advisory boards.
This study was supported in part by a grant from the National Center on Minority Health Disparities and a grant from the National Institute of Child Health and Human Development, National Institutes of Health.
Editorial: Minority Representation Needed in Research Institutions
Community involvement in research governance and decision-making are critical but are only part of the solution, writes Somnath Saha, M.D., M.P.H., of the Portland VA Medical Center, Ore., in an accompanying editorial.
"From the perspective of minority communities, research institutions will continue to have a biased slant until more people from their communities are part of those institutions," Dr. Saha writes. "Many minority groups are grossly underrepresented in the health care professions and in the research enterprise.
"If we want our study samples to be broadly representative, then we should make every effort to make our institutions equally representative by increasing the presence of minority clinicians, scientists and members of research teams and institutional review boards. If we want minority communities to participate in our work, we must first fix the racial and ethnic imbalance that continues to tilt our ivory towers."
- Kumaravel Rajakumar; Stephen B. Thomas; Donald Musa; Donna Almario; Mary A. Garza. Racial Differences in Parents' Distrust of Medicine and Research. Arch Pediatr Adolesc Med, 2009; 163 (2): 108-114 [link]
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