Children, Research, and Guinea Pigs: Reflections on a Metaphor

Some studies have investigated parental attitudes toward participation in a clinical trial2 and parental perspectives on the informed consent process,3 while others have focused on parents' reasons for enrolling their child in a clinical trial and their decision-making process in general.4 What is known is that parents' decisions about whether to enroll their children in clinical trials for cancer treatment are complex. Framing analysis applied to research on medical decision-making and specifically the informed consent process has shown that the specific language and framework in which physician-investigators discuss various options and survival statistics can influence adult patients' decisions about participating in clinical research10 or accepting offered medical treatment.11 More recently, Sankar examined the use of frames during informed consent to research discussions as a way to explain the pervasiveness of the therapeutic misconception among adult participants in phase I clinical trials.12 Her inquiry revealed that when investigators discussed the study's objective of reducing risk instead of determining toxicity, the investigators referred to the Food and Drug Administration's (FDA) drug approval process to indicate that the study was safe.