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

Abstract

Purpose Increasing 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. Methods We 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). Results Sixty-eight percent of respondents (30 of 44 respondents) demonstrated basic understanding of the study purpose; 55% (24 of 44 respondents) demonstrated comprehensive understanding. Understanding was more frequently seen in those with higher education and greater genetic knowledge according to basic (81% v 50% [ P = .05]; and 82% v 46% [ P = .03], respectively) and comprehensive (73% v 28% [ P = .01]; 71% v 23% [ P = .01]) definitions. Ninety-three percent of respondents who believed the primary purpose was to improve the patient’s care simultaneously stated that the research also aimed to benefit future patients. Conclusion Most participants in pediatric tumor profiling research understand that the primary goal of this research is to improve care for future patients, but many express dual goals when they participate in sequencing research. Some populations demonstrate increased rates of misunderstanding. Nuanced participant views suggest that additional work is needed to assess and improve participant understanding, particularly as tumor sequencing moves beyond research and into clinical practice.

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Informed consent for genetic testing in hematology

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