Subjects enrolled in studies testing high risk interventions for incurable or progressive brain diseases may be vulnerable to deficiencies in informed consent, such as the therapeutic misconception (TM). However, there is a continuing debate about the definition and measurement of TM, making assessments of TM controversial. In this qualitative pilot study of persons enrolled in a phase I test of gene transfer for Parkinson’s disease, we developed and tested an interview guide focusing on how the subjects made their decision to participate, with an emphasis on understanding the as the unit of interest, rather than focusing only on isolated statements. The results indicate that a subject’s understanding of the purpose of research is best explored in juxtaposition to the subject’s motivation for participation. Doing so reveals potential avenues for measuring and preventing TM.
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