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Variable conceptions of population in community resource genetic projects: a challenge for governance
Authors:Ben Merriman  Santiago J. Molina
Affiliation:1. Department of Sociology, University of Chicago, Chicago, IL, USAmerriman@uchicago.edu;3. Department of Sociology, University of California, Berkeley, CA, USA
Abstract:In recent years, human genetic research has developed rapidly, and the cost of sequencing and computational technology continues to decline. This research has also been pushed forward by a major organizational innovation: the development of large, open-access databases of human gene sequences or biospecimens known as community resource projects. This article describes a challenge for the governance of these projects: conceptions of population vary significantly across organizational contexts. This makes it difficult to manage risk appropriately, as measures intended to address hazards to one kind of population may be inadequate for others. Unstable conceptions of population may also make it difficult to identify the stakeholders interested in the governance of these projects. This argument is developed by examining two cases, the International HapMap Project and 1000 Genomes Project, which make use of at least six distinct conceptions of population in different organizational segments.
Keywords:bioethics  consent  genomics  governance  population  risk
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