The results of this study demonstrate that parents’ distrust in medicine and research is an important determinant of enrolling their children in research. Although a few studies have looked at the characteristics of consenting parents, our study is the first to explore the effect of race on participation.19–21
We found that African American parents have greater distrust toward medical research than white 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.
Less education and more children in the household were also significantly associated with greater parental distrust. Adjusting for covariates, we found that race and education alone remained independent correlates of greater distrust. Thus, the greater degree of distrust in African American parents in this sample was not explained by their demographic characteristics.
In our sample, parental education was negatively associated with distrust, with distrust highest in those who had not graduated from high school and lowest among college graduates. However, Harth and Thong21
reported that volunteering parents in Australia, when compared with nonvolunteering parents, who were approached for enrollment of their children into a clinical trial had lower levels of education, lower levels of employment, greater health-seeking behavior, and a greater degree of trust. Also contradictory to our findings regarding the relationship between education and trust are the findings of Moseley et al,23
who, in a cross-sectional survey of parents’ trust in their child’s physician, observed lower levels of trust in those who had more than a high school education and private insurance. These findings suggest that well-educated parents from higher socioeconomic strata are likely to be more knowledgeable and may have higher expectations from their child’s physician and could have lower levels of trust if their expectations are not met. We believe the relationship between parental education, trust, and willingness to enroll one’s child in research is complex and multifactorial and requires further study.
Additionally, it seems likely that other aspects of socioeconomic status may be important determinants of parental distrust of medical research. When the subset of respondents who reported their income was further analyzed, the association between race and distrust was attenuated somewhat, suggesting that part of this association may be because of both education and income. Additional studies are warranted to examine the relationship between parental distrust, race, income, education, and other indicators of socioeconomic status. Future studies should attempt to measure wealth as a more complex income variable.
We were reassured that the overall attitude toward medical research was favorable among both African American and white parents. However, African American parents with less distrust had a significantly more favorable attitude toward medical research than those with greater distrust, and a similar nonsignificant trend was observed in the white parents. Clearly, gaining the trust of parents may help increase the participation of their children in clinical research.
Among African American parents, there was a marginally significant association between lower levels of distrust and a history of their child participating in research. Although the causal direction of this relationship is unknown, it is likely that positive experiences in research participation may lead to greater levels of trust and perhaps to greater willingness to participate in the future. Thus, greater personal knowledge about medical research is one way to dispel some of the distrust and fears about research. 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. 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 to disseminate information about studies while protecting the interests of research subjects and potentially lessening distrust.24
Incentives have always been perceived as an essential tool for research enrollment. This study suggests that their effectiveness may be attenuated by a greater level of distrust, more so among African American parents than white parents. Thus, incentives to participate are less likely to be effective among African Americans with high distrust compared with those with low distrust. In a similar finding among pediatric asthma research participants and their parents, financial compensation was not a significant factor influencing their decision to enroll.25
Incentives are important but may be insufficient to overcome cultural barriers among African Americans. The relationship between research compensation and trust may be more complex than usually thought and deserves further exploration.
There are several limitations to our study. The data are based on the opinions of a convenience sample of parents at a single institution and thus have limited generalizability. The research is descriptive and intended to suggest avenues for future exploration. In addition, the opinions regarding incentives and research participation are hypothetical. Furthermore, it is likely that the degree of distrust that participating parents expressed is underestimated, as they were willing to take the survey despite any potential underlying distrust.
Despite these limitations, we found that African American parents had higher levels of distrust of medical research than white parents and that this may present a barrier to enrollment of their children in clinical research. Even if their rates of enrollment are not affected, the issue of higher levels of distrust among minority parents must be addressed because it could affect adherence to protocol and retention.26
To be altruistic, the decision to enroll one’s child in clinical research has to be value-based, not coerced, with a clear understanding of the risks and benefits of the study and a sense of empowerment to dissent, without distrust or fear of losing medical services.27