Hereditary Chorea. Test – Diagnostic – Prognostic
On the basis of the ethical implications of current diagnosis and treatment procedures for incurable diseases, the research project focused on the Hereditary Chorea, an autosomal dominant neurodegenerative disease (also known as Huntington’s disease or, more colloquially, St. Vitus’ dance) first described by George Huntington in 1872.
The project researched the process of the disease’s social and medical construction: How were those suffering from Huntington’s disease treated before the existence of precise nosology? Were they stigmatized, were they regarded as the embodiments of social anxieties, or were they even seen as a chosen few? Following this genealogical reconstruction, the project also examined current medical procedures concerning Hereditary Chorea in which every member of a family with past cases of the disease faces a 50 % risk of developing the sickness at some point in their future. Since 1993, a pre-symptomatic genetic test has been available on the market, allowing to determine whether or not the disease is about to break out in a person. This new ability for detection, however, is problematic as the test does not veritably diagnose an already progressing illness, it rather predicts one’s own future. It therefore raises questions concerning the right to know and not to know, the right to anonymity, as well as questions of responsibility towards future generations.
Based on the complex scientific-political and ethical problems that emerge in connection to the genetic test, the project asked the following questions, among others: Which protocols govern medical practices between laboratory diagnostics and prognostic revelations? How does medicine react when it has no possibility to restore a “state of normality”?
With a foreword by Alice Wexler and an afterword by Isabelle Stengers, translated by Damien Bright