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9 - The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy

Published online by Cambridge University Press:  05 September 2014

Henk Ten Have
Affiliation:
Duquesne University
Mairi Levitt
Affiliation:
Lancaster University
Darren Shickle
Affiliation:
University of Leeds
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Summary

Introduction

With advancing knowledge and information the right to know and the right not to know are becoming increasingly problematic. Whether or not we have these rights is debatable as it seems we are more and more absorbed in processes that make it unavoidable to know. It is even argued that there is a duty to know, so that whether we like it or not, we are dictated by knowledge to decide how we wish to apply it. I have earlier attributed the association between availability and application to the phenomenon of geneticization (Ten Have 1997). This is the socio-cultural process of interpreting and explaining human beings using the terminology and concepts of genetics, so that not only health and disease but all human behavior and social interactions are viewed through the prism of biomolecular technology (Ten Have 2012b). Geneticization has since then only amplified its outreach and impact. Many human behaviors have been associated and ‘explained’ by the existence of a specific gene. The well-known discussion on the ‘warrior gene’ attributed to the Maori in New Zealand is no exception. The occurrence of this gene was used in a murder case in 2010 to argue for diminished responsibility, and it influenced the jury’s decision (‘not murder’) (Hagerty 2010). The discovery of the gambling gene (1996) and adultery gene (2010) have opened up interesting perspectives for the notion of responsibility. There is even a search for a genetic origin of human rights (Keane 2010). Medicine in particular is affected by geneticization. Genes are increasingly considered as the origin of health and disease. There is only a limited role for psychological, social and environmental factors since the ultimate causal factors are genetic. The concept of health is also changing (Torres 2006). With the possibility of detecting mutations in the genome that might in the future produce serious diseases, one is only considered healthy if the genome is healthy. As soon as a mutation is discovered one is no longer healthy but ‘unhealthy.’ The implication is that as genetic technologies are multiplying the number of healthy people will decline, and ultimately, most people will be unhealthy. Health will become exceptional and rare with the progress of genetics. In fact, with this logic, the genetic framework will become inescapable (Stempsey 2006).

Type
Chapter
Information
The Right to Know and the Right Not to Know
Genetic Privacy and Responsibility
, pp. 133 - 150
Publisher: Cambridge University Press
Print publication year: 2014

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