JMIR Publications

ABSTRACT

Background:

The genomic frontier continues to revolutionize the practice of oncology. Advances in cancer biology from tumorigenesis to treatment resistance are driven by the molecular underpinnings of malignancy. As we collectively ride this crest, the implications for patients and research subjects alike are vulnerable to turning tides. Specifically, how precision oncology is framed as both a clinical tool and a research tool is a constantly moving target, and one that directly influences conversations between oncologists and their patients. Prior research has shown patients often have unmet or unrealistic expectations regarding the clinical utility of oncology research and genomic sequencing. Yet these studies indicate the need for more in-depth investigation of how and why patients choose to participate in such research.

Objective:

A qualitative ethical analysis to better understand patient and provider perspectives on enrollment in precision oncology.

Methods:

Paired semi-structured interviews were conducted with patients enrolled in a prospective head and neck precision oncology research platform, along with their oncology providers, at an NCI-designated academic cancer center.

Results:

Three major themes emerged from the analysis: 1) There are distinct and unique challenges with informed consent to precision medicine, chiefly involving the ability of both patients and providers to effectively understand the science underlying the research; 2) Unique benefits of precision medicine enrollment are of paramount importance to patients considering enrollment; and 3) Patients have little concern for the risks of research enrollment, particularly in the context of a low-burden protocol.

Conclusions:

Patients and their providers offer complimentary and nuanced perspectives on their motivation to engage in precision head and neck oncology research. This reflects both the inherent promise and enthusiasm within the field, but also its limitations and the challenges of ensuring that both patients and clinicians alike understand the complexities of the science involved.