Duality of Purpose: Participant and Parent Understanding of the Purpose of Genomic Tumor Profiling Research Among Children and Young Adults With Solid Tumors

PurposeIncreasing use of genomic tumor profiling may blur the line between research and clinical care. We aimed to describe perspectives of research participants about the purpose of genomic tumor profiling research in pediatric oncology.MethodsWe surveyed 45 participants (response rate, 85%) in a pilot study of genomic profiling in pediatric solid tumors at four academic cancer centers after the return of sequencing results. We defined understanding according to a one-item (basic) definition (recognition that the primary purpose was not to improve the patient’s treatment) and a four-item (comprehensive) definition (primary purpose was not to improve patient’s treatment; primary purpose was to improve treatment of future patients; there may not be direct medical benefit; most likely result of participation was not increased likelihood of cure).ResultsSixty-eight percent of respondents (30 of 44 respondents) demonstrated basic understanding of the study purpose; 55% (24 of 44 respondents) demonstrated comp...