The Human Genome Diversity Project: A case study in coproduction

被引:64
|
作者
Reardon, J
机构
[1] Belfer Ctr. for Sci. and Intl. Aff., John F. Kennedy School of Government, Harvard University, Cambridge, MA 02138
关键词
consent; culture; genetics; identity; race; rights;
D O I
10.1177/030631201031003002
中图分类号
N09 [自然科学史]; B [哲学、宗教];
学科分类号
01 ; 0101 ; 010108 ; 060207 ; 060305 ; 0712 ;
摘要
Since its inception in 1991, the design of the proposed Human Genome Diversity Project has shifted several times. However, one unchanging and central Project goal is to collect blood and other human tissue samples from 'genetically distinct' indigenous groups around the globe. This goal has proved highly controversial, and the Diversity Project has thus far failed to move beyond the planning stage. In this paper I argue that the reason for the Project's inconclusive and open-ended character is that project organizers are attempting to stabilize and control a highly contested terrain structured by emotionally and politically charged discourses. These discourses inextricably entangle scientific and social issues including North/South relations, colonization, intellectual property rights and the origins of human diversity To move forward, as the paper demonstrates, project organizers would have to negotiate these entanglements, and 'coproduce' a natural and social order that could accommodate their project. The paper explains why this process of coproduction proved to be so labour-intensive in the case of the Diversity Project, and why the Project's main responses to its critics to date have failed to provide the tools needed to do this work.
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页码:357 / 388
页数:32
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