'From Social Problems to Privacy Issues: A Symptomatic Reading of the Discourse on Genetic Discrimination' (Institut for Sozialforschung Working Paper, 2016) by Thomas Lemke comments
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.
Leek argues
Over the past twenty-five years, a series of empirical studies in different countries have shown that our increasing genetic knowledge leads to new forms of exclusion, disad- vantaging and stigmatisation. 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. Reported incidents include disadvantages at work, problems with insurance policies and difficulties with adoption agencies.
Today, many countries around the world have introduced laws designed to prevent discrimination against individuals due to their genetic properties. These legislation projects seek to guarantee the right to ›genetic privacy‹ and protect personal data against misuse. The notion of genetic discrimination, which was largely unknown only a few years ago, has now become a key term informing not only scientific work but also the regulatory and legal responses to what is conceived as a »new form of social prejudice« (Rifkin 2000).
This paper critically engages with the current understanding of genetic discrimination. I argue that the debate on genetic discrimination suffers from a juridical framing that focuses on institutional actors and privacy issues at the expense of a more complex and convincing approach. I will concentrate on the opposition of the symptomatic and asymptomatic ill as one essential element in the genetic discrimination discourse. Drawing on 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. Firstly, I will present a short genealogy of the problem and set out what genetic discrimination is and how it became a research topic over the past twenty-five years. Secondly, I will sketch the regulatory and legal responses to the phenomenon, taking Germany as an example. I will then discuss some characteristics of the debate on genetic discrimination, in order to show how the current focus and framing of this discourse makes it difficult to address important areas of concern. The last part of the paper advances the thesis that we have 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.
