African-Americans are significantly underrepresented in clinical research and researchers say that distrust toward medicine and research in large part accounts for why they don’t participate in clinical studies.

 

Enrollment of children into clinical research studies depends on parental attitudes, beliefs, and expectations, found the researchers at Children’s Hospital of Pittsburgh of UPMC and the University of Pittsburgh Graduate School of Public Health. In an article published in the February issue of Archives of Pediatrics & Adolescent Medicine, the researchers address racial differences in parental trust in medicine and research and their implications for enrollment of children

 

“Race matters,” says Stephen Thomas, director of the Center for Minority Health in the Graduate School of Public Health at the University of Pittsburgh. “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.”

 

Thomas says that 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.

 

In 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.

 

“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,” says Kumaravel Rajakumar, a pediatrician in Children’s Hospital of Pittsburgh’s Division of General Academic Pediatrics and 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.”

 

The researchers say the use of culturally appropriate recruitment materials, as well as using 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, they say, the establishment of community research advisory boards, which provide feedback at all stages of a research study, as has been done in Pittsburgh, also helps ensure that minorities participate and disseminate information about studies while protecting the interests of research subjects and potentially reducing distrust.

 

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 versus 50 percent). They also more often believed that physicians prescribe medications as a way of experimenting on unknowing patients (40 percent versus 28 percent). And, they were more likely to believe that medical research involves too much risk to the participant (46.8 percent versus 26 percent).

 

In addition, the researcher found that African-American parents were more likely to believe that physicians will not make full disclosures regarding their child’s participation (24.6 percent versus 10 percent) and that research participants would be favored and receive better medical care (48.6 percent versus 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 compared to 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.