IRB: Ethics & Human Research

Parent and Child Perceptions of the Benefits of Research Participation

The primary objective of this study was to describe parents’ and children’s perceptions of the health benefits of research participation. We assessed 180 children ages 8 to 17 years who had recently enrolled in medical research as well as their parents. Of the 136 parents with children on observational protocols, 41% indicated that there would be a health benefit to the child. Their descriptions of benefits revealed that many envisioned a future health benefit to the child arising from improvements in treatment due to the research. There was no difference in ratings of likelihood or importance of benefit between parents of children enrolled in observational protocols and those in interventional protocols. Children enrolled in observational protocols were more likely to respond that they “don’t know” to the question about potential health benefit compared to children in interventional protocols. For both observational and interventional protocols, the informed consent process may be enhanced when research personnel explicitly differentiate between types of potential benefits, including heretofore-unrecognized future direct health benefits.