How do adult cancer patients experience uncertainty when making decisions related to learning incidental results from genome sequencing?

Awardee: Chloe Mighton

Graduate Program: MSc (transferred to PhD)

Institution: University of Toronto

Supervisor(s): Yvonne Bombard

ARCC Program Area(s): Societal Values and Public Engagement

Competition: 2018

Project Summary:

Genetic testing can diagnose hereditary cancers, help patients and their family members manage their cancer risk, and seek appropriate treatments. A new type of genetic test, genome sequencing, is increasingly used in precision oncology. Genome sequencing looks at most of a person’s DNA and can identify risks for cancer as well as thousands of additional diseases risks. These additional disease risks are called “incidental results.” There are many things that are uncertain about incidental results. Before a person has genome sequencing, it is impossible to know what disease risks will be found. This might make it hard for cancer patients to decide whether they want to learn incidental results, and what types of results they would want to learn about. Even if a disease risk is found, it is uncertain when or even if the disease will occur, and what impact it will have on a person. Uncertainty might cause anxiety, and might also cause over-testing and over-use of healthcare resources. Very little research has explored how cancer patients think about uncertainty related to incidental results. I will explore how adult cancer patients perceive, appraise, and manage uncertainty when they make decisions related to learning incidental results. To do this, I will interview adult cancer patients who are receiving genome sequencing as part of a randomized controlled trial and have the option to learn incidental results. I will interview up to thirty cancer patients. Genome sequencing has the potential to improve cancer care through informing cancer detection, prevention and treatment. Incidental results are a complicated feature of this type of testing. As genome sequencing is increasingly used in cancer care, it is necessary to understand how patients deal with uncertainty related to incidental results, as uncertainty may lead to anxiety, over-testing, and unnecessary health service use. The results of this study could support the delivery of incidental results from genome sequencing to improve outcomes for cancer patients.