Thomas Lemke | From Social Problems to Privacy Issues. A Symptomatic Reading of the Discourse on Genetic Discrimination

Thomas Lemke
From Social Problems to Privacy Issues
A Symptomatic Reading of the Discourse on Genetic Discrimination (This paper was first presented at the symposium »The ›Biological Turn‹ in Law: A Critical Appraisal« organized by Miguel Vatter and Marc de Leeuw at the University of New South Wales in Sydney on 23 October 2015.) IfS Working Paper #9

The term genetic discrimination has been coined to refer to a (negative) differential treatment of individuals on the basis of what is known or assumed about his or her genetic makeup. This paper critically engages with the current understanding of genetic discrimination. It shows that the distinction made between people who are symptomati-cally and asymptomatically ill as an essential element of the genetic discrimination discourse. Taking up Louis Althusser’s interpretative method of »symptomatic reading« (Althusser and Balibar 1997), I seek to reconstruct and make explicit what is absent, omitted and repressed by the way the problem of genetic discrimination is framed and addressed.
The argument is structured as follows. I will first present a short genealogy of the problem, outline the concept of genetic discrimination and how it has become a research topic over the past twenty-five years. Second, the paper sketches the regulatory and legal responses to the phenomenon, focusing on Germany as an example. I will then discuss some characteristics of the debate on genetic discrimination, in order to show how it fails to address important areas of concern in consequence of its current focus and framing. The last section advances the thesis that it is necessary to reconsider and renegotiate the scope and the meaning of genetic discrimination in the light of new technological challenges, recent commercial dynamics and a revised understanding of genetic information following the Human Genome Project.

09 (Juni 2016)