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Authored by: Stephen Hilgartner

Handbook of Genomics, Health and Society

Print publication date:  April  2018
Online publication date:  April  2018

Print ISBN: 9781138211957
eBook ISBN: 9781315451695
Adobe ISBN:


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The rise of genomics and its deepening entrenchment in a variety of practices and sites has been accompanied by significant epistemic and sociopolitical change. Since its earliest days, genomics has been a site where new forms of knowledge and new regimes of control have been co-produced. In a variety of sites, actors have contested control over the knowledge objects that genomics produces, the jurisdictions in which it is practiced, and the roles and relationships among agents that it instantiates. The stakes in these struggles have been diverse, including efforts to shape science policy, win scientific priority, distribute credit, spread information, capture property, establish authority, save face, protect human subjects, and maintain national security. New “knowledge-control regimes” (Hilgartner, 2017) have taken shape in laboratories and databases, in research programs and funding agencies, in private property and novel forms of “open science,” and in modes of governing relationships between science and its publics. Increasingly, as genomics has grown more significant in health and medicine, regimes have also been adjusted in medical practice and clinical research. Regulatory mechanisms and frameworks have been reconfigured; new ontologies, clinical guidelines, and informal standards have developed; and jurisdictional boundaries, both formal and informal, have shifted.

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