DDRIG: Constructions and Understandings of Cancer Genetic Risk

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General Audience Summary This study seeks to shed light on how genetic risk for cancer is made visible, communicated, understood, and acted upon. Breast and ovarian cancer (BOC) genetic testing in the U.S. has recently undergone dramatic changes. The standard initial screening offered to patients has expanded from a test for high-risk mutations on two genes to a test for mutations on as many as 29 genes, many of which pose only a low or moderate risk of developing cancer. Through 12 months of fieldwork combining document analysis, participant observation, and in-depth interviews with health professionals and mutation carriers, this study will investigate the following three key questions. How is BOC genetic risk made visible in the era of multi-gene panel testing? How is genetic risk information understood and acted upon by diverse carriers of BOC mutations? Finally, how are relationships among and between laboratory researchers, medical experts, and patients being transformed by the utilization of multi-gene panel tests? Examining these questions will help to reveal the social and structural dimensions of risk and genetic medicine. The proposed study will broaden and deepen understandings of the personal, clinical, and societal implications of the recent expansions of genetic testing. Its findings might also aid patients in medical decision-making and enhance broader public literacy in genetic biomedicine.Technical Summary This project brings STS frameworks to the study of risk. Using tools and theoretical frameworks from science and technology studies (STS), medical sociology, and gender studies, this project aims to understand how these recent shifts in the practices of genetic medicine are shaping the active construction of risk, beliefs and communication about risk, risk identities, and risk management decisions. It aims to examine how certain ideas about genetic risk gain credibility over others; how genetic risk is actively produced, not just discovered; and how social and cultural values are embedded in genetic risk technologies and risk management guidelines. This project also presents an opportunity to empirically investigate and further develop social theories on patienthood, biomedicalization, and health citizenship. This study will also explore whether and under what circumstances patients of BOC genetic medicine--a rapidly changing field that requires highly technical and specialized knowledge--form biosocial communities and act as empowered agents in relation to medical authority.