Institute for Technology Assessment and  Systems Analysis (ITAS)

Individual medicine and societal autonomy. Of genetic data and genetic knowledge

Project description

The 21st century is the first century of genetic data. The Human Genome Project provided the kick-start for the possibility to generate a vast amount of data and to transform the data into different forms of genetic knowledge. One special form is the so-called “future knowledge” made possible by predictive genetic diagnosing. Although the prediction of future diseases is based on statistical probabilities including uncertainties, new dimensions of responsibility and the risk of genetic discrimination come along for the new subject category of the “asymptomatic ill”. Furthermore, the broad range of commercial genetic analyses (by companies such as 23andMe, AncestryDNA, and others) leads to a legal limbo and uncertainty of what happens with sensitive medical data.

The project explores what different status of genetic data are in the discussion and what kind of arguments to protect genetic data in a special way we find in the discourse. Furthermore, it discusses the right to non-knowledge in combination with data protection to avoid societal pressure and risks of discrimination.

From a theoretical point of view, the project examines the theories of sociology of knowledge and the bio-power concept by Michel Foucault. It conducts a discourse analysis to research the construction of genetic (future) knowledge.

Administrative data

Supervisor: Prof. Dr. Michael Haus (Heidelberg University)
Advisor: tbd
Doctoral students at ITAS: see Doctoral studies at ITAS

Contact

Anja Folberth, M.A.
Karlsruhe Institute of Technology (KIT)
Institute for Technology Assessment and Systems Analysis (ITAS)
P.O. Box 3640
76021 Karlsruhe
Germany

Tel.: +49 721 608-28177
E-mail