title: Flexible positions, managed hopes: the promissory bioeconomy of a whole genome sequencing cancer study.
abstract: Genomic research has rapidly expanded its scope and ambition over the past decade, promoted by both public and private sectors as having the potential to revolutionize clinical medicine. This promissory bioeconomy of genomic research and technology is generated by, and in turn generates, the hopes and expectations shared by investors, researchers and clinicians, patients, and the general public alike. Examinations of such bioeconomies have often focused on the public discourse, media representations, and capital investments that fuel these "regimes of hope," but also crucial are the more intimate contexts of small-scale medical research, and the private hopes, dreams, and disappointments of those involved. Here we examine one local site of production in a university-based clinical research project that sought to identify novel cancer predisposition genes through whole genome sequencing in individuals at high risk for cancer. In-depth interviews with 24 adults who donated samples to the study revealed an ability to shift flexibly between positioning themselves as research participants on the one hand, and as patients or as family members of patients, on the other. Similarly, interviews with members of the research team highlighted the dual nature of their positions as researchers and as clinicians. For both parties, this dual positioning shaped their investment in the project and valuing of its possible outcomes. In their narratives, all parties shifted between these different relational positions as they managed hopes and expectations for the research project. We suggest that this flexibility facilitated study implementation and participation in the face of potential and probable disappointment on one or more fronts, and acted as a key element in the resilience of this local promissory bioeconomy. We conclude that these multiple dimensions of relationality and positionality are inherent and essential in the creation of any complex economy, "bio" or otherwise.
authors.affiliation: Department of Anthropology, University of North Carolina, Chapel Hill, NC, USA; Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Rachel
authors.initials: R
authors.lastname: Haase
authors.affiliation: Institute for Health & Aging, University of California San Francisco, USA; Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Marsha
authors.initials: M
authors.lastname: Michie
authors.affiliation: Department of Anthropology, University of North Carolina, Chapel Hill, NC, USA; Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA. Electronic address: debra.skinner@unc.edu.
authors.forename: Debra
authors.initials: D
authors.lastname: Skinner
mesh_terms: D000328:Adult; D000818:Animals; D005260:Female; D023281:Genomics / Q000458:organization & administration*; D065026:Hope; D006801:Humans; D007407:Interviews as Topic; D019359:Knowledge; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics*; D040081:Protein Array Analysis; D012108:Research Personnel / Q000523:psychology*; D014019:Tissue Donors / Q000523:psychology*; D014495:Universities
keywords: Bioeconomies; Biovalue; Cancer; Positionality; Research-clinical care boundary; Translational genomics; United States; Whole genome sequencing