Masters Thesis

Understanding patient and clinician perspectives on the role of genomic testing in cancer treatment decisions

The federal Precision Medicine Initiative was launched in 2015 with the goal of increasing targeted treatments for diseases. Currently there is not much known about patients undergoing large scale genomic testing with the goal of utilizing precision medicine, and their resulting treatment outcomes. The aim of this project is to learn about patient and clinician understanding of large scale genomic testing in oncology, the communication around germline findings, and the resulting “actionability” of these tests. A combination of ethnographic participant observations and in-depth interviews with clinicians ordering a 500 gene panel, which analyzes both tumor and germline DNA, and their patients were undertaken. The patients were interviewed at varying stages in the testing process, including before and/or after results disclosure. Participants included 6 patients, 3 family members, and 9 clinicians. A total of 15 interviews and 20 hours of observation were conducted. Analysis included coding and thematic development and was informed by a modified version of grounded theory. Results of this project show that the purpose of this testing may be viewed differently by different individuals and the challenges in communicating the difference between an analysis of the tumour tissue versus the germline tissue. Additional findings highlight the difficulty of finding “actionable” genetic information, as well as the diverse experiences patients have in disclosing germline findings to family members. This study’s results will help to improve understandings of how clinicians are utilizing this technology with their patients. The findings will also serve to highlight the perspective of patients undergoing large scale germline and tumour testing, and the impact that testing has had on their health and that of their families. These insights should aid in the development of physician and patient education materials to support the decision-making process around pursuing large scale genomic testing in oncology.

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