What genome sequencing results do young breast cancer patients want returned and when?
Methods. 1075 women diagnosed with breast cancer age 40 or younger completed an online survey. We examined level of interest and preferred timing for return of seven types of genome sequencing results. We built multivariable logistic regression models to assess whether genome sequencing knowledge, worry about genetic-based disease risk, and time orientation (present/future) predicted being very interested in each result type.
Results. The proportion very interested in each result type ranged from 77% (variants affecting risk of a preventable/ treatable disease) to 16% (variants with uncertain meaning). The proportion that wanted a result type returned before or at cancer diagnosis ranged from 96% (variants affecting treatment response) to 31% (variants related to ancestry/ physical traits). In multivariable models, higher knowledge (p-values <0.0001) and greater worry (p-values <0.01) were related to being very interested in all result types. Being future oriented was related to being very interested in six of seven types (p-values <0.05).
Discussion. Participants’ widely varying preferences for return of genome sequencing results varied by knowledge, worry, and time orientation. A one-size-fits-all policy to return of results will likely not meet these patients’ needs. Tailored interventions may be needed to help patients make informed choices about return of results.
Learning Areas:Communication and informatics
Describe level of interest in seven types of genome sequencing results among young breast cancer patients. Explain factors that affect young breast cancer patients’ interest in different types of genome sequencing results. Discuss when young breast cancer patients would want different types of genome sequencing results returned.
Qualified on the content I am responsible for because: I have a doctoral degree in public health and health communication and have conducted research in the area of genetic communication for more than 10 years. I am principal or co-investigator on multiple federally funded grants on this topic.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.