Parental Distrust May Explain Lack of Black Children in Clinical Trials

TUESDAY Feb. 3, 2009 -- Black parents are more likely than white parents to distrust medical research, which may explain why black children are frequently underrepresented in studies.

So conclude University of Pittsburgh researchers who surveyed 190 parents (140 black, 50 white) who brought their children to a primary-care clinic.

The parents 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 influence their decision to allow their child to participate in research.

Compared to white parents, black parents were more likely to:

  • Report distrust of medical research (67 percent vs. 50 percent)
  • Believe that doctors prescribe medications as a way of experimenting on unknowing patients (40 percent vs. 28 percent)
  • Think that medical research involves too much risk to participants (46.8 percent vs. 26 percent)
  • Believe that doctors won't make full disclosures regarding their child's participation (24.6 percent vs. 10 percent)
  • Think that research participants would be favored and receive better medical care (48.6 percent vs. 28 percent).

The study also found that education level was associated with distrust of medical studies. A high level of distrust was expressed by 74 percent of those with less than a high school education, compared to 44 percent of college graduates. But even after the researchers controlled for education, black parents were two times more likely than whites to distrust medical research.

The findings appear in the February issue of the Archives of Pediatrics & Adolescent Medicine.

"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," wrote Dr. Kumaravel Rajakumar, of the University of Pittsburgh School of Medicine and Children's Hospital of Pittsburgh, and colleagues. "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."

The researchers said that the "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."

The government-sponsored Tuskegee Study, named after a town in Alabama where participants were recruited, enrolled several hundred poor, black sharecroppers, telling them that they would receive drugs to treat their syphilis infections. But lifesaving drugs were purposely withheld so the "natural" course of the disease could be observed. The experiment was shut down after a leak to the press in 1972.

According to the experts, strategies that may help overcome the distrust of blacks toward medical research include culturally appropriate recruitment materials, use of research assistants with similar racial and cultural backgrounds, and the establishment of community research advisory boards.

More information

The U.S. Food and Drug Administration has more about children and clinical trials.

Posted: February 2009


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