My dissertation takes the relatively common genetic disease cystic fibrosis as a case study of novel diagnostic technologies, risk, and biosociality. I suggest that the bacterial fragmentation of the patient population produced novel social and legal experiences for the CF community which serves as a critical resource for considering the ethical, legal, and social implications of the Human Genome Project and the Human Microbiome Project. I chart how the CF community was reconfigured through bacterial surveillance starting in the 1980s, as scientists and clinicians used new bacterial assays to sort patients by bacterial strain, and as policy-makers enacted guidelines encouraging the separation and isolation of people with CF from one another to prevent risk of transmissible infections.
My research interests cut across the medical humanities into more applied research on how diagnostic technologies are integrated into clinical practice. I am interested in how patients, providers, policy-makers, and payers make sense of diagnostic and screening technologies and how said technologies impact or define patient populations. More broadly, I am interested in illness experience, patient communities, and risk concepts and conditions within clinical medicine as well as the ethical, legal, and social implications of the Human Genome and Human Microbiome Projects. In terms of disciplines, my interests span bioethics, history of genetics, history of medicine, disability studies, medical anthropology, and genetic counseling.
Young JL, Werner-Lin A, Mueller R, Hoskins L, Epstein N, Greene M. Following BRCA1/2 mutation-positive women during their reproductive years: a longitudinal case series. Journal of Psychosocial Oncology 35(4): 393-408, 2017.
Walser S; Werner-Lin A; Mueller R; Miller VA, Biswass S, Bernhardt B. How do providers discuss the results of pediatric exome sequencing with families? Personalized Medicine 14(5): 409-422, 2017.
Bradbury A, Patrick-Miller L, Harris D, Stevens E, Egleston B, Smith K, Mueller R, Brandt A, Stopfer J, Rauch S, Forman A, Kim R, Fetzer D, Fleisher L, Daly M, Domchek S. Utilizing Remote Real-Time Videoconferencing to Expand Access to Cancer Genetic Services in Community Practices: A Multicenter Feasibility Study. J Med Internet Res. 18(2): 1-15, 2016.
Valverde K, Mueller R, Paciotti B, Conway L. An Exploratory Study of Employers Attitudes Towards a Clinical Doctorate in Genetic Counseling. J Genet Couns. 25(1):179-88, 2016.
Lindee S, Mueller R. Is cystic fibrosis genetic medicine’s canary? Perspectives in Biology and Medicine, 54(3): 316-331, 2011.