Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis
BackgroundThe 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...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2022-05-01
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| Series: | JMIR Cancer |
| Online Access: | https://cancer.jmir.org/2022/2/e35033 |
| _version_ | 1827858327382523904 |
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| author | Kayte Spector-Bagdady Madison Kent Chris D Krenz Collin Brummel Paul L Swiecicki J Chad Brenner Andrew G Shuman |
| author_facet | Kayte Spector-Bagdady Madison Kent Chris D Krenz Collin Brummel Paul L Swiecicki J Chad Brenner Andrew G Shuman |
| author_sort | Kayte Spector-Bagdady |
| collection | DOAJ |
| description |
BackgroundThe 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.
ObjectiveThis study presents a qualitative ethical analysis to better understand patient and provider perspectives on enrollment in precision oncology research.
MethodsPaired 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.
ResultsThere 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.
ConclusionsPatient-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. |
| first_indexed | 2024-03-12T12:53:14Z |
| format | Article |
| id | doaj.art-259028fd7d794d15bd441ee986744e24 |
| institution | Directory Open Access Journal |
| issn | 2369-1999 |
| language | English |
| last_indexed | 2024-03-12T12:53:14Z |
| publishDate | 2022-05-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Cancer |
| spelling | doaj.art-259028fd7d794d15bd441ee986744e242023-08-28T21:42:28ZengJMIR PublicationsJMIR Cancer2369-19992022-05-0182e3503310.2196/35033Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical AnalysisKayte Spector-Bagdadyhttps://orcid.org/0000-0002-5851-6224Madison Kenthttps://orcid.org/0000-0002-4544-6060Chris D Krenzhttps://orcid.org/0000-0002-0514-4586Collin Brummelhttps://orcid.org/0000-0001-7198-8560Paul L Swiecickihttps://orcid.org/0000-0003-2286-3555J Chad Brennerhttps://orcid.org/0000-0003-3238-1111Andrew G Shumanhttps://orcid.org/0000-0002-9305-7860 BackgroundThe 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. ObjectiveThis study presents a qualitative ethical analysis to better understand patient and provider perspectives on enrollment in precision oncology research. MethodsPaired 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. ResultsThere 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. ConclusionsPatient-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.https://cancer.jmir.org/2022/2/e35033 |
| spellingShingle | Kayte Spector-Bagdady Madison Kent Chris D Krenz Collin Brummel Paul L Swiecicki J Chad Brenner Andrew G Shuman Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis JMIR Cancer |
| title | Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis |
| title_full | Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis |
| title_fullStr | Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis |
| title_full_unstemmed | Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis |
| title_short | Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis |
| title_sort | patient and provider perspectives on enrollment in precision oncology research qualitative ethical analysis |
| url | https://cancer.jmir.org/2022/2/e35033 |
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