Date of Award

6-30-2016

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Whitney Dobek

Abstract

The landscape of cancer genetic counseling and testing is rapidly evolving. Genetic testing technology is improving, management guidelines are evolving, and genetic testing options are expanding. These frequent updates to the components of cancer genetics have increased the complexity of managing patient care over time. In particular, this raises questions on the duty to re-contact patients as new information becomes available. This study explored healthcare providers’ duty to re-contact through the interests and expectations of patients, including which circumstances warrant re-contacting, which healthcare provider is responsible for re-contacting the patient, and the preferred method of re-contacting. Physicians’ opinions on whether or not patients should be updated as well as the person responsible for updating were also explored. To answer the questions set forth in this study, we surveyed patients undergoing genetic counseling for a hereditary cancer condition and physicians who work with cancer genetic counselors. The study was limited by low response rate from patients, so no statistically significant results could be confirmed. However, both groups indicated re-contacting patients with updates was desirable and assigned a high level of responsibility to providers for delivering these updates to patients. The majority of patient participants believed the duty to keep patients informed fell primarily on the genetic counselor and preferred the genetic counselor to initiate contact. In contrast, physician participants indicated genetic counselors, referring physician, and a shared responsibility between these two providers most frequently as the responsible parties.

Rights

© 2016, Zoe Elizabeth Siegel

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