Grant: Doctoral Award - Frederick Banting and Charles Best Canada Graduate Scholarships

Genome sequencing is a new type of genetic test that can help diagnosis and manage patients' risk for hereditary cancers. A challenge with using this test is that risks for thousands of other diseases can also be found, called "incidental results." There is a lot of uncertainty associated with these incidental results. It is uncertain if or when the diseases associated with them will occur, and what the impacts of the disease will be on patients' lives. Patients may feel uncertain about what their incidental results mean for their health, or how to act on them. Uncertainty may cause over-diagnosis, over-treatment, and misuse of health services. The impacts of uncertainty related to incidental results on adult cancer patients and their healthcare providers are not known. This study will address the question, how do adult cancer patients and their healthcare providers (primary care and genetics specialists) perceive, respond to and manage uncertainty related to incidental results from genome sequencing? Patients will be participants in a trial (n=260) where they will receive genome sequencing, and half will have the option to learn incidental results. Using survey scales, I will measure perceived uncertainty, psychological distress, and health service use at baseline, 2 weeks, 1 month, 6 months and 1 year after return of results. I will compare perceived uncertainty between patients who receive incidental results and those who do not. Among patients who receive incidental results, I will evaluate the relationship between perceived uncertainty and distress, and between perceived uncertainty and health service use. I will also conduct interviews with up to 30 patients to explore their experiences with uncertainty in more depth. I will interview up to 30 healthcare providers who care for these patients, to explore their experiences with managing their patients' incidental genome sequencing results. This research could inform how genome sequencing is offered clinically.