Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis

Kayte Spector-Bagdady; Madison Kent; Chris D Krenz; Collin Brummel; Paul L Swiecicki; J Chad Brenner; Andrew G Shuman

doi:10.2196/35033

Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis

JMIR Cancer. 2022 May 3;8(2):e35033. doi: 10.2196/35033.

Authors

Kayte Spector-Bagdady^{1

2}, Madison Kent^{1

3}, Chris D Krenz¹, Collin Brummel^{3

4}, Paul L Swiecicki^{3

4}, J Chad Brenner^{3

5}, Andrew G Shuman^#^{1

3

5}

Affiliations

¹ Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, United States.
² Department of Obstetrics and Gynecology, University of Michigan Medical School, Ann Arbor, MI, United States.
³ Michigan Otolaryngology and Translational Oncology Laboratory, University of Michigan Medical School, Ann Arbor, MI, United States.
⁴ Division of Hematology-Oncology, Department of Medicine, University of Michigan Medical School, Ann Arbor, MI, United States.
⁵ Department of Otolaryngology-Head and Neck Surgery, University of Michigan Medical School, Ann Arbor, MI, United States.

^# Contributed equally.

PMID: 35503525
PMCID: PMC9115650
DOI: 10.2196/35033

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. 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.

Keywords: academic cancer center; ethical analysis; head and neck oncology; interview; oncology; oncology research platform; patient; patient-provider dyads; precision oncology; provider; semistructured interview.

©Kayte Spector-Bagdady, Madison Kent, Chris D Krenz, Collin Brummel, Paul L Swiecicki, J Chad Brenner, Andrew G Shuman. Originally published in JMIR Cancer (https://cancer.jmir.org), 03.05.2022.

Abstract

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