This volume presents the collective adventure of Dingdingdong, the Institute for the Co-production of Knowledge about Huntington’s Disease, founded in 2012 between Paris and Brussels.
Katrin Solhdju’s Testing Knowledge: Toward an Ecology of Diagnosis pursues the question of taming the violence of the new species of medical foreknowledge represented by genetic testing. Adopting historical and epistemological perspectives on diagnostic situations, including observations from anthropological field research, speculative storytelling, and ancient oracles, Testing Knowledge proposes a new ecology of predictive diagnostic gestures, which potentially concern us all.
Testing Knowledge is preceded by the Dingdingdong collective’s Manifesto (2013), which tells the story of the young Alice Rivières, who in 2006 took the presymptomatic, genetic test, foretelling her that she will eventually develop Huntington’s. Her first-person account of the revelation of her test results, which she experienced as an act of poisoning or cursing, pulls the reader into the manifold ethical, psychological, and existential issues inherent to medical predictions.
Testing Knowledge is also preceded by a foreword from Alice Wexler, author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research, and is followed by an afterword by philosopher Isabelle Stengers.
About the Authors
Katrin Solhdju is a cultural studies scholar and FNRS research professor in the department of Sociology and Anthropology at the University of Mons in Belgium. Her research approaches are inspired by the Science and Technology Studies, pragmatist philosophy, and speculative thought while her objects rather coincide with the field of the Medical Humanities. She is one of the co-founders of the collective Dingdingdong, the Institute for the co-production of knowledge about Huntington’s Disease, member of the Belgian Advisory Committee on Bioethics and of the Groupe d’études constructivistes at the Free University of Brussels. Next to a large number of articles some of her book-publications are: Selbstexperimente: Die Suche nach der Innenperspektive und ihre epistemologischen Folgen (Verlag Wilhelm Fink, 2011), Faire art comme on fait société: Les Nouveaux commanditaires (co-ed., presses du réel, 2013), and L’Épreuve du savoir: Propositions pour une écologie du diagnostic (presses du réel, 2015).
Alice Rivières is a carrier for the genetic mutation for Huntington’s Disease, a rare, genetic, neuroevolutionary disease which has slowly transformed her: body and soul. Ever since she learned about her extra-ordinary becoming, she dedicates most of her time to observing and writing about what she calls her “long walk of neuroevolutionary metamorphosis.” Living in Paris and Brussels, she is Dingdingdong’s special delegate to Huntingtonland. She is the author of Le Manifeste de Dingdingdong (Editions Dingdingdong, 2013), Anouck, portrait dingdingdong n°1 (with A. Compain-Tissier, Editions Dingdingdong, 2013), as well as of dozens of notes on www.dingdingdong.org.
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Hello Saadia: try this link: https://library.oapen.org/bitstream/handle/20.500.12657/47819/0307.1.00.pdf