Distrust toward medicine and research plays a significant role in African-Americans’ lack of participation in clinical trials, according to a study by researchers at Children’s Hospital of Pittsburgh of the University of Pitts Medical Center (UPMC) and GSPH.
A recent study published in the February issue of Archives of Pediatrics & Adolescent Medicine addresses the racial differences in the role of parental trust toward medicine and research, and their implications for the enrollment of children into clinical research. African-Americans are significantly underrepresented in clinical research. The researchers found that enrollment of children into clinical research studies depends on parental attitudes, beliefs, and expectations.
In a research survey of 190 parents (140 African-American and 50 white) of patients seen at Children’s Hospital’s Primary Care Center, African-American parents were twice as likely to be distrusting of medical research as white parents. This study was conducted by Kumaravel Rajakumar, MD, a pediatrician in Children’s Division of General Academic Pediatrics, in collaboration with Stephen Thomas, PhD, the Philip Hallen Professor of Community Health and Social Justice and director of GSPH's Center for Minority Health.
“Parental distrust toward medicine and research can be a barrier for enrollment of children in clinical research studies. The higher levels of distrust among African-American parents can mean that they are less likely to enroll their children in clinical trials, which can have profound implications for eliminating racial and ethnic health disparities, as it impacts the extent to which research findings can be applied to the general population including minorities,” said Rajakumar, also an assistant professor of pediatrics in the University of Pittsburgh School of Medicine. “Our study also found that financial and other incentives would only be moderately effective in increasing participation. As a medical community, we need to develop better strategies for overcoming the distrust of African-American parents to help achieve adequate participation of African-American children in clinical 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 also was 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 being two times more likely of being distrusting compared with white parents.
“Race matters,” Thomas said. “It is important for the biomedical research community to acknowledge that African-American distrust toward medicine and research is not irrational; on the contrary, it reflects the legitimate discontent of far too many black families who experience racial discrimination when seeking medical care along with the clear and convincing evidence of racial disparities in their health status compared with whites. The experience of discrimination is not limited to one individual or one generation but is passed on through word of mouth, keeping alive the cultural memory of how medical science was used to justify the racial inferiority of African-Americans,” he said.
The authors conclude that culturally appropriate recruitment materials and research assistants with similar racial and cultural backgrounds as the subject population can help provide accurate information and quell parental distrust toward clinical research. Additionally, the establishment of community research advisory boards, which provide feedback at all stages of a research study, as has been done in Pittsburgh, is another means to ensure that minority community members participate and disseminate information about studies while protecting the interests of research subjects and potentially reducing distrust.