TY  - JOUR
AU  - Spector-Bagdady, Kayte
AU  - Kent, Madison
AU  - Krenz, Chris D
AU  - Brummel, Collin
AU  - Swiecicki, Paul L
AU  - Brenner, J Chad
AU  - Shuman, Andrew G
PY  - 2022
DA  - 2022/5/3
TI  - Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis
JO  - JMIR Cancer
SP  - e35033
VL  - 8
IS  - 2
KW  - oncology research platform
KW  - precision oncology
KW  - head and neck oncology
KW  - academic cancer center
KW  - semistructured interview
KW  - patient-provider dyads
KW  - oncology
KW  - interview
KW  - ethical analysis
KW  - patient
KW  - provider
AB  - 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. The framing of precision oncology as both a clinical and research tool is constantly evolving and directly influences conversations between oncologists and their patients. Prior research has shown that patient-participants often have unmet or unrealistic expectations regarding the clinical utility of oncology research and genomic sequencing. This indicates the need for more in-depth investigation of how and why patients choose to participate in such research. Objective: This study presents a qualitative ethical analysis to better understand patient and provider perspectives on enrollment in precision oncology research. Methods: Paired semistructured interviews were conducted with patient-participants enrolled in a prospective head and neck precision oncology research platform, along with their oncology providers, at a National Cancer Institute–designated academic cancer center. Results: There were three major themes that emerged from the analysis. (1) There are distinct and unique challenges with informed consent to precision medicine, chiefly involving the ability of both patient-participants and providers to effectively understand the science underlying the research. (2) The unique benefits of precision medicine enrollment are of paramount importance to patients considering enrollment. (3) Patient-participants have little concern for the risks of research enrollment, particularly in the context of a low-burden protocol. Conclusions: Patient-participants and their providers offer complementary and nuanced perspectives on their motivation to engage in precision oncology research. This reflects both the inherent promise and enthusiasm within the field, as well as the limitations and challenges of ensuring that both patient-participants and clinicians understand the complexities of the science involved. 
SN  - 2369-1999
UR  - https://cancer.jmir.org/2022/2/e35033
UR  - https://doi.org/10.2196/35033
UR  - http://www.ncbi.nlm.nih.gov/pubmed/35503525
DO  - 10.2196/35033
ID  - info:doi/10.2196/35033
ER  -