Hereditary Chorea. Test – Diagnostic – Prognostic

Project description

The research project addresses the ethical implications of the present-day diagnosis and treatment procedures of incurable sicknesses. It particularly concerns hereditary chorea, the autosomal dominant neurodegenerative sickness first described by George Huntington in 1872 (also known as Huntington’s disease or more colloquially, St. Veitus’ dance). The symptoms, ranging from the loss of motor control to dementia, appear most often between the ages 40–50.
The first step of the project delineates the process of the social, as well as medical, construction of the sickness: How were those suffering from Huntington’s disease treated before the existence of a precise nosology? Were they stigmatised, or regarded as the embodiments of social anxieties or even as the »chosen ones«?
The second step entails the examination of contemporary medical procedures concerning hereditary chorea before the background of this genealogical reconstruction. Statistically speaking every member of a Huntington family faces a 50% risk of developing the sickness at some point in his of her life – an inheritance that cannot be refused. Since 1993, a pre-symptomatic genetic test has been made available on the market, allowing for the determination of imminent outbreaks. This new capacity for detection, however, turns out to be problematic: as the test does not veritably diagnose an already ongoing illness, it is much more a prognosis of one’s own future. It therefore raises questions concerning the rights of knowing versus not-knowing, the rights of anonymity, as well as the responsibility towards future generations.
Based on the complex scientific-political and ethical problems that emerge in regards to the genetic test, this project looks into the following questions: Which protocols govern medical practices that oscillate between laboratory diagnostics and prognostic revelations? Which self-conception of medicine as a discipline is furthermore reflected in such protocols? And how does concrete praxis correspond in accordance with restrictive protocol? What happens to the discipline of medicine in the absence of hope for the recovery of a »normal condition«?

Program Sponsorship Federal Ministry of Education and Research (BMBF) 2012–2013
Head researcher(s): Katrin Solhdju

Publications

Katrin Solhdju

Die Versuchung des Wissens
Vorschläge für einen gemeinschaftlichen Umgang mit prädiktiver Gen-Diagnostik

transcript, Bielefeld 2018, 140 pages
ISBN: 978-3-8376-4130-1
Katrin Solhdju, Traduit de l'allemand par Anne Le Goff

L’épreuve du savoir
Propositions pour une écologie du diagnostic

Éditions Dingdingdong, Paris 2015, 224 pages
ISBN: 978-2-9543875-2-9