Meeting the genome half way: entangled agency where the genome meets the clinic
Chris Goldsworthy (University of Oxford)
Paper short abstract:
National efforts to compile Whole Genome Sequence (WGS) data has led to novel research - clinical hybrids. Drawing on ethnographic observations at the coal-face of this hybrid entanglement this paper attempts to make sense of the transformation of Macro genomic data to individual patient diagnosis.
Paper long abstract:
At the center of large national genome sequencing research projects is the ontological tension between the aggregated and the individual or the frontiers of knowledge and individual patient care. This paper discusses the configuration of the macro and micro as a hybrid assemblage. Such an assemblage creates a novel paradigm for evidence based medicine where the patient or family becomes a data point in the evidence drawn upon in their own clinical care. Drawing upon Ethnographic observations of clinical practice relating to a national genome project, including observations of local multi-disciplinary team meetings in which the data from a large genome research project are interpreted for individual patient diagnosis. Within these meetings the macro and micro genome are brought together creating a hybrid assemblage, in which multiple entangled forms of socio-material agency intra-act in practice. This paper examines the ontological negotiation practiced in these meetings for the purpose of producing a clinically applicable outcome. The implications of this paper are twofold; it firstly reimagines personalized genomics in which increasing amounts of data are seen to increase the accuracy of individual WGS test results. Secondly, through the analysis of this situated entanglement this paper constructs an understanding of agentic relativism, in which material agency is enmeshed within the institutional conditions under which it is enacted.
Precision medicine at the crossroads: meeting the micro and macro, the molecular and social in new medical strategies