How do children and parents make decisions about pediatric clinical research?

Little is known about how children and parents make decisions regarding pediatric research. To provide data, we surveyed children aged 7 to 14 years who were enrolled in clinical research or receiving clinical care for cancer or asthma at one of 7 sites, and a parent or guardian. The present manuscript reports data on the respondents' attitudes and experiences regarding the child's involvement in making clinical care and research decisions. Of 117 parent-child pairs invited to participate, 81 completed the survey (response rate=69.2%). Pediatric respondents reported that their decisions regarding research enrollment were influenced primarily by a desire to benefit themselves, and to help others. In the research group, 90.5% of pediatric respondents believed they should be involved in making research enrollment decisions, whereas only 61.5% of the adult respondents believed children should be involved in making these decisions. These findings highlight the potential for disagreement within families regarding children's involvement in making decisions about research enrollment. Investigators should be aware of and find ways to address these disagreements when soliciting assent from children.