Human Genes and Neoliberal Governance

A Foucauldian Critique

Antoinette Rouvroy

• Publisher: Routledge-Cavendish
• Year: 2007
• eBook ISBN: 9781134066674
• Edition: 1
• Topic: Law
• Subtopic: Law Theory & Practice
• Index: Law

Original and interdisciplinary, this is the first book to explore the relationship between a neoliberal mode of governance and the so-called genetic revolution.

Looking at the knowledge-power relations in the post-genomic era and addressing the pressing issues of genetic privacy and discrimination in the context of neoliberal governance, this book demonstrates and explains the mechanisms of mutual production between biotechnology and cultural, political, economic and legal frameworks.

In the first part Antoinette Rouvroy explores the social, political and economic conditions and consequences of this new 'perceptual regime'. In the second she pursues her analysis through a consideration of the impact of 'geneticization' on political support of the welfare state and on the operation of private health and life insurances. Genetics and neoliberalism, she argues, are complicit in fostering the belief that social and economic patterns have a fixed nature beyond the reach of democratic deliberation, whilst the characteristics of individuals are unusually plastic, and within the scope of individual choice and responsibility.

This book will be of interest to all students of law, sociology and politics.

Part 1
The production of genetic knowledge and the rise of genetics as a new perceptual regime

Chapter 1

The production of genetic knowledge

A. A brief history of the ‘gene’ concept

The history of the concept of the gene (Rheinberger et al, 2000) tells us that the gene was a theoretical concept before being conceived as an object or thing: the idea of the gene had appeared long before what would later be conceived of as its material support, the double-helical structure of DNA, had been discovered. After the work of Gregor Mendel on heredity (1863) had been rediscovered by Hugo de Vries, Carl Correns and Erich von Tschermak in the early years of the twentieth century, Wilhelm Johannson was the first to use the term gene in 1909, to name a holistically designed hereditary potential that was somehow secreted by the whole organism. In his view, genes were not to be considered as having a material nature, they were not to be considered as pieces of morphology, contrary to the suggestions made following the rediscovery of Gregor Mendel’s experimental work that there was something ‘particulate’ that was transmitted between generations. The gene, as Wilhelm Johannsen described it, ‘must be used as a kind of calculation unit. One does not have the right to define the gene as morphological unity in the sense of the Darwinian gemmules or of the biophores, or of other determinants or of other speculative morphological conceptions of that kind’ (Johannsen, 1909). Johannsen also insisted on the distinction between the phenotype (the observable characteristics of the organism¹ ) and the genotype (containing the hereditary instructions). In his view, the phenotype and genotype, visible parts of the organism and hereditary instructions, were complementary realities interacting in the constitution of the living being, with no hierarchy of explanatory power (Barbieri, 2002). The identification of chromosomes as the cellular support of genetic information by Morgan, in 1913, revived the suggestion that genes were somehow material . Yet, the reification of the concept of gene did not reach its apogee until genes became defined as sequences of nucleotides localisable on chromosomes and the double-helical structure of the DNA molecule was discovered by James Watson and Francis Crick in 1952.² Much of their findings were based on the work of others, and in particular, on the X-ray diffraction photographs produced by Rosalind Franklin in 1951 at King’s College, London, which Watson and Crick acquired without Rosalind Franklin’s consent. ³ Her X-ray photographs of DNA and her unpublished personal research notes were disclosed, without her knowledge and consent, by her colleague Maurice Wilkins to James Watson. ⁴ Rosalind Franklin’s X-ray diffraction photographs were the first to show the essential structure of DNA: its double-helix shape which also indicated its method of replication. Although Franklin was the first to elucidate the basic helical structure of the DNA molecule, she never received due credit for her fundamental role. ⁵

Watson immediately recognised, in Franklin’s photographs, the shape of a double helix and rushed to publish the discovery. Rosalind Franklin died from cancer in 1959, at the age of 39. In 1962, James Watson, Francis Crick and Maurice Wilkins received the Nobel Prize. One would have expected those men to acknowledge their debt and express their gratitude to Rosalind Franklin, instead of which James Watson, ten years after Franklin’s death, erased Franklin’s fundamental contribution and caricatured her in terms that merely attest to his own sexist prejudices. ⁶ Rosalind Franklin was not there any more to defend herself but has become, since that publication, an icon of the crusade against sexism in science.

B. The ‘central dogma’ of molecular biology and the Human Genome Project

The central dogma of molecular biology

As the new celebrity of molecular biology, Francis Crick restated and published the ‘central dogma of molecular biology’ (Crick, 1970) which he had enunciated in 1958 (Crick, 1958) and which has remained unquestioned for the past half century and more. The dogma is that each gene in the DNA molecule is transcribed as intermediary molecules of RNA, which are in turn translated into the amino acid sequences that make up proteins. In other words, the central dogma holds that genetic information hard-wired into DNA is transcribed into messenger RNA (mRNA) and that each mRNA thus contains the programme for the synthesis of a particular protein (or small number of proteins), which, acting as an enzyme, controls one chemical reaction in the cell. The process of protein synthesis is thus conceived as a unidirectional information flow (DNA ⇒ RNA ⇒ Proteins ⇒ Cells). DNA, according to the dogma, contains the complete genetic information that defines the structure and function of an organism. This central dogma has been the motivation for a reductionist approach to genome research methodology: one implicit assumption of the dogma is embodied in the credo ‘one gene codes for one protein’. Because humans are known to make some 90,000 different types of proteins, it was inferred that we should have, as humans, at least as many genes to encode them. The usual representation, before completion of the Human Genome Project, was that ‘Our bodies contain billions of cells. In each of those cells is a nucleus that contains all the information required to make a complete human being. The information exists in the form of 50,000 to 100,000 structures called genes. Each gene possesses the ability to encode one protein . . .’ (Richards and Hawley, 2004).

The Human Genome Project

More than a decade ago, Murphy and Lappé cautioned that:

The genome project is ‘big science’ and even bigger consequences are expected from it, but insofar as the project represents a coordinated plan of study, the potential exists for its functioning as a scientific and moral ideology because it is committed to a single way of representing genetic information and carrying with it the seeds of its own moral authority.
The genome project therefore, has the potential of functioning as an ideology with all the undesirable effects of ideology in conforming people and their expectations.

(Murphy and Lappé, 1994)

One has to acknowledge that the Human Genome Project has been the most commercially-driven extensive scientific endeavour in history. ⁷ The belief, born with the identification of DNA as the genetic material, that genes were the central determinants of biological function, acted as a rallying motive for coordinated efforts to determine the entire human genetic sequence. ⁸ The Human Genome Project (HGP), a powerful partnership between governments, universities, researchers and private industry (Carraro et al., 2001), involving laboratories in the United States, the United Kingdom, Japan, Germany, France, Italy, Russia and China, coordinated by the American Department of Energy (DOE) and the American National Institutes of Health (NIH), and fuelled by billion of dollars⁹ of research funds from the United States Congress, by other countries’ public money and by venture capital from biotechnology companies around the world, ¹⁰ was officially initiated in 1990.

The HGP’s aim was not to answer any specific questions about specific genes, but merely to map and sequence the human genome, that is, to produce a list of the genes used by the human organism. Mapping the human genome has consisted in identifying the location of genes on the chromosomes. The map of the human genome, ¹¹ showing the location of thousands of identifiable areas of deoxyribonucleic acid (DNA), was only the initial stage in the exploration of the human genome. The following stage was the sequencing of the human genome. Sequencing a chromosome or one of its constituent parts, a gene, consists in determining the order of its nucleotide bases, that is, listing the order in which the four nucleotide bases – Adenine, Cytosine, Guanine, Thymine – are arranged on each gene. A, C, G and T are thus the building blocks of DNA and, according to the classical presentation of it, encode the genetic instructions of all living things.

Locating and identifying these genes were the ambitious aims of the Human Genome Project. Knowledge of the location and structure of genes (the map and sequences of the human genome), it was anticipated, would have the potential to accelerate the rate at which scientists would identify what genes code for which function, when genetic variations among individuals result in the expression of a disorder or impact upon the possibility of an adverse reaction to certain drugs, and, ultimately, how to use that information to predict, diagnose, prevent, and cure so-called genetic diseases.

Several spectacular announcements, thoroughly orchestrated by the media, successively reported the completion of the human genome’s sequence in June 2000, February 2001, April 2003 and October 2004 (Wade, 2003).

On 26 June 2000, after ten years of public and private investment, the Human Genome Project Consortium (HUGO), along with private industry (the Celera corporation), proclaimed, jointly with President Bill Clinton and Prime Minister Tony Blair, the achievement of sequencing of 90 per cent of the gene-containing part of the genome. ¹² Yet, only 28 per cent of that 90 per cent sequence had reached a finished form, and it contained about 150,000 gaps. According to the agreement announced on 26 June 2000, the Human Genome Project Consortium and Celera published their respective working drafts of the human genome sequence on the second week of February 2001, simultaneously in the two journals, Science (Venter, 2001) and Nature (International Human Genome Sequencing Consortium, 2001), the first publicising the efforts of Craig Venter and the private-sector entrepreneurs of Celera Genomics, and the second, the publicly funded collaboration led by Francis Collins of the National Human Genome Research Institutes. Yet the drafts were still far from complete: they were both missing some 10 per cent of the so-called euchromatin – the portion of the genome representing the major genes – and some 30 per cent of the genome as a whole (which includes the gene-poor regions of heterochromatin ). The final sequence, containing 99 per cent of the gene-containing sequence and fewer than 400 defined gaps, was published in April 2003, marking the fiftieth anniversary of Watson and Crick’s publication of the double-helical structure of DNA.

Notwithstanding the declaration made that day by Francis S Collins, leader of the Human Genome Project since 1993, that all of the project’s goals had been successfully completed (well in advance of the original deadline and at a cost substantially lower than the original estimates) the subsequent announcement, in October 2004 (International Human Genome Sequencing Consortium, 2004), of a new final sequence of the human genome, questions the sincerity and earnestness of the announcements through which scientists communicate with the public. Obviously directed at securing funding and public support, attracting the attention of the scientific community and awakening a general interest in genetic medicine among the public, these premature celebrations have successfully diverted public attention from the fact that, since the first publication of the drafts, the finishing procedure undertaken by the International Human Genome Sequencing Consortium Centers roughly doubled the total duration, and also increased the cost of the project.

The hype surrounding the Human Genome Project has contributed to building a cultural drift both favourable to genomic research and anticipating that its applications will radically transform human life. Transcribing their genuine enthusiasm in lofty metaphors, the human genome pioneers emphasised the importance of the Human Genome Project as an enterprise that would allow humanity to understand the secrets of life , the blueprint containing the information that makes us humans or our DNA instruction book.¹³ Scientists, ¹⁴ popularisers of biological science¹⁵ and politicians alike indulged in contributing to the metaphor inflation to such an extent that the metaphorical nature of their narratives was soon overlooked. Grandiloquent celebrations have accompanied human genetic research from the beginning. In 2001, Bill Clinton even declared that:

Today’s announcement represents more than just an epic-making triumph of science and reason. After all, when Galileo discovered he could use the tools of mathematics and mechanics to understand the motion of celestial bodies, he felt, in the words of one eminent researcher, that he had learned the language in which God created the universe. Today, we are learning the language in which God created life. We are gaining ever more awe for the complexity, the beauty, the wonder of God’s most divine and sacred gift. ¹⁶

In 2004, European Research Commissionner Philippe Busquin held that ‘For the first time in history, humanity holds the “book of life” in its hands.’ ¹⁷ The widespread expectation sustaining both the huge private and public investments in human genetic research, and public anxieties concerning this same research, is that the genetic revolution will bring individualised medical prevention and treatment through genetic and pharmacogenetic testing, genetic therapy for a wide variety of disorders, pre-implantation and pre-natal genetic selection and germline therapy to eliminate the possibility of children being born with genetic pathology or unexpressed or recessive ‘genetic errors’, and a comprehensive understanding of individual physical, cognitive, and behavioural traits – an understanding that could impact on individual prospects in the socio-economic spheres of insurance and employment, on administrative or judicial decisions in familial matters such as child custody or adoption, etc., should genetic profiling become routine for strictly non-medical purposes. ¹⁸

Faith in genetics has proved extraordinarily resilient in the face of the modest impact of human genetics in people’s daily lives and the unkept promises of therapies for severe detectable genetic conditions and the delay of substantial results in pharmacogenomics.¹⁹ The cycle of expectations and disillusionment in genetic science has been usefully documented by sociologists and philosophers of science. ²⁰ Thacker, in this regard, rightfully observes that:

The genome announcement can be understood as being indicative of a deep-rooted crisis in biotechnology and biomedicine: At a moment when biotechnology, at one of its high-points hegemonically and economically, is thriving totally on the basis of futuristic scenarios, the sequencing of the human genome provides the reassurance of something done, something completed, as if to serve as an alibi for all of the hype generated, and funds invested. In other words, we have long seen how biotechnology and biomedicine have been able to survive with a combination of futuristic promises and a lack of substantial, concrete results (gene therapy is a prime example here).

(Thacker, 2000)

The framing of ethical, legal and social issues: the governance of genetic research

A significant feature of the Human Genome Project was the way it managed to itself frame the ethical, legal and social issues that it could potentially involve. The Human Genome Organisation (HUGO) has recognised to some extent that the approaches and information it generates may produce or exacerbate important ethical, legal and social issues. It therefore appropriated approximately 3 per cent of the overall budget of the Human Genome Project (the NIH would later raise that sum to 5 per cent) to study, and potentially make policy recommendations, concerning the ethical, legal and...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgments
• Table of cases
• Introduction
• Part 1: The production of genetic knowledge and the rise of genetics as a new perceptual regime
• Part 2: The socio-economic life of genes: genetic risks and insurance