Family Disclosure of Cancer Risk: An Ethnographic Study

There is almost no systematic, empirical research on the topic of how information about genetic risk information travels through families, what family and cultural characteristics might impede or promote its dissemination, and how individuals at genetic risk conceptualize these issues. The purpose of this project is to explore these issues using risk information about breast and ovarian cancer as a model. Empirical data collection will begin with recruitment of individuals at elevated genetic risk for breast/ovarian cancer who present as patients at genetic counseling centers in Portland, OR and Seattle, WA, but an attempt will be made to look at the entire family as the unit of analysis. Data about how risk information passes through the family will be gathered by qualitative interviews, observations of clinical encounters, and family focus groups. In the last half of the grant a Policy Group will be convened to examine empirical data from the study in light of normative legal and bioethical assumptions about these issues. (Member of CGSC)