Financial compensation to adolescents for participation in biomedical research: adolescent and parent perspectives in seven studies.

OBJECTIVE: To examine the impact of financial compensation on pediatric asthma research participation decision-making and determine whether perceptions of fair compensation differed for parents and adolescents, lower and higher income participants, and compensation-informed and uninformed participants in minimal and above minimal risk research. STUDY DESIGN: Adolescents (n = 36) with asthma and their parents reviewed 7 pediatric asthma research protocols, decided whether they would choose to participate, and provided estimates of "fair" compensation for their participation. Chi-square, analysis of variance, and analysis of covariance were used to determine the affects of compensation on participation and whether various respondents differed in the perceptions of fair compensation. RESULTS: Financial compensation did not affect participation decisions. Estimates of fair compensation were lower for adolescents, lower income respondents, and participants who were naive about potential compensation. Fair compensation estimates were higher than actual compensation for minimal risk studies and lower for above minimal risk studies. CONCLUSIONS: Financial compensation may be a minor consideration in pediatric research participation decision-making. Still, differences in how pediatric researchers and their prospective participants judge fair compensation create the potential for undue influence. Pediatric researchers should use caution when determining a reasonable financial compensation for research participation.

Comparisons of adolescent and parent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols.

PURPOSE: Through the processes of permission and assent, parents and adolescents have a shared involvement in decision-making about adolescent research participation. Yet little empirical data exists examining the prevalence and contexts in which adolescents and parents disagree on research participation decisions. The purpose of this study was to compare parent and adolescent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols. METHOD: Thirty-six adolescents diagnosed with asthma and a parent of each, independently rated their willingness to participate in nine pediatric asthma research protocol vignettes. The selected protocols were chosen by an expert panel as representative of typical minimal and above-minimal risk pediatric asthma studies. RESULTS: Parents and adolescents were significantly less likely to enroll in above-minimal risk studies. However, this was qualified by a finding that adolescents were significantly more willing than parents to enroll in above-minimal risk research. Across all nine studies, parents and adolescents held concordant views on participation decisions 60% of the time, on average. Perception of potential study benefit was the most frequent reason provided for participation decisions by both parents and adolescents. CONCLUSION: Parents and their adolescents report substantial discordance in their views about participating in asthma research across a variety of protocols. These differences of opinion highlight the need to carefully consider the process by which families are offered the option of adolescent research participation. Investigators may want to adopt recruitment procedures that involve adolescents in initial discussions, especially for above-minimal risk studies.