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Science, Technology & Human Values
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Locating Genetic Knowledge: Picturing Marfan Syndrome and Its Traveling Constituencies

Deborah Heath

Lewis and Clark College

This article draws attention to the production and circulation of genetic knowledge among three constituencies—laboratory researchers, clinicians, and health advocates— all of whom have a stake in research on a heritable connective tissue condition known as Marfan syndrome. National and international conferences provide a context that brings members of these groups together. Such meetings are performance settings, which include the display of visual images depicting various aspects of Marfan syndrome and of the bodies and lived experience of those who have it. The article examines how these images are interpreted, appropriated, and exchanged and how their circulation is both grounded in local knowledge and the grounds for transformative translocal practice.

Science, Technology & Human Values, Vol. 23, No. 1, 71-97 (1998)
DOI: 10.1177/016224399802300104
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