Black Parents May Be More Likely to Distrust Medical Research

Laurie Barclay, MD

February 03, 2009

February 3, 2009 — Black parents may be more likely to distrust medical research than white parents, according to the results of a self-administered, cross-sectional survey study reported in the February issue of the Archives of Pediatric and Adolescent Medicine.

"Among minority groups, African Americans are frequently underrepresented in clinical research," write Kumaravel Rajakumar, MD, from the University of Pittsburgh School of Medicine in Pennsylvania, and colleagues. "Poverty, lack of awareness and access to medical care, transportation and parking, and social and cultural norms combined with individual attitudes may contribute to reluctance to participate in clinical research. African Americans' distrust of medical research has been suggested to be an important reason for their lack of participation."

The goal of this study was to evaluate and compare the attitudes and trust expressed by black and white parents regarding having their children participate in research.

From August 2004 through April 2005, 190 parents (140 black parents and 50 white parents) at the Primary Care Center at Children's Hospital of Pittsburgh completed a survey. The main study endpoint was parental distrust of medical research, as reflected in a summative score of distrusting responses to 8 questions evaluating trust in research.

Compared with white parents, black parents expressed significantly greater distrust regarding having their children participate in research (67% vs 50%; P = .04). Educational level was also a predictor of distrust, which was expressed by 74% of parents who had less than a high school education compared with 44% of college graduates (P = .03). Even after controlling for education, black race remained a predictor of distrust (odds ratio, 2.25; 95% confidence interval, 1.01 – 5.01).

"The degree of parental distrust toward medical research was significantly greater among African American parents," the study authors write. "Parental distrust may be a barrier to enrollment of African American children in clinical research. Strategies for overcoming the higher level of distrust in African American parents are warranted for ensuring adequate representation of African American children in clinical research."

Limitations of this study include that the data were based on the opinions of a convenience sample of parents at a single institution, limiting generalizability; descriptive research; hypothetical opinions regarding incentives and research participation; and probable underestimation of the degree of distrust expressed by participating parents.

"African American parents were significantly more likely than white parents to believe that medical research involved too much risk to the participant; that physicians will not make full disclosures regarding their child's participation; and that participants in medical research will be favored and will receive better medical care," the study authors write.

An accompanying editorial by Somnath Saha, MD, MPH, from Portland VA Medical Center in Oregon, notes that increasing the representation of women and racial and ethnic minorities in human research has become a national priority.

"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."

The National Center on Minority Health Disparities, National Institutes of Health, and theNational Institute of Child Health and Human Development, National Institutes of Health, supported this study. The study authors and Dr. Saha have disclosed no relevant financial relationships.

Arch Pediatr Adolesc Med. 2009;163:108–114, 181–182.


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