Adolescents' and parents' perceptions of risk and research participation

How do research participants understand medical risks and make the decision to participate in research studies? Little research has been done on risk perception and decision making for research participation, an important subject for the ethical conduct of pediatric medical research. Thus, the perspectives of those who have made or who are considering the research decision have gone mostly unsolicited. This dissertation is one of the first attempts to explore risk perceptions and research participation decisions qualitatively.; Individual interviews were conducted with 32 diabetic or overweight/at-risk adolescents and 31 of their parents. All participants were asked to discuss their perceptions of the risks of medical procedures that have been used previously in endocrinology research with children and adolescents, as well as perceptions of the risks they face in daily life. All transcripts were thematically coded, and these themes were analyzed with the use of data matrices and electronic software that facilitated text searching and organization.; Results indicate that nearly all adolescents and parents found the risks of the medical procedures to be quite small, mostly irrelevant to their decision making, and considerably less than the risks they face in their daily lives. When evaluating research risks, participants focused almost entirely on risk magnitude (i.e., severity), neglecting or minimizing the probability of risk occurrence. For the few participants who considered risk likelihood, probability of occurrence was interpreted categorically; that is, the risk could either happen or not, and their personal experience determined what they believed would occur. Many participants also perceived personal benefits of their participation, although therapeutic benefits were not intended in the scenarios. Learning new information, helping others, and contributing to community welfare were additional reasons for participation.; By providing the frequently overlooked perspectives of eligible and actual research participants, these results have implications for researchers, whose communication of research risk information can be improved by a greater understanding of how participants are likely to interpret that information. They are also relevant to the work of research regulators, who are responsible for interpreting the meaning of ambiguous standards, such as minimal risk and minor increase over minimal risk.