Splicing Life?

The New Genetics and Society

Peter Glasner, Harry Rothman

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351898485
• Edition: 1
• Topic: Social Sciences
• Subtopic: Cultural & Social Anthropology
• Index: Social Sciences

Geno-technology is a technology unlike any other, with significant implications for life in the 21st century. It directly affects us at a deeply personal level, it poses a threat to the boundaries which conventionally define selfhood, it generates potentially novel risks and dangers, and it threatens the very basis of accepted understandings of culture and society. This unique, exploratory volume discusses the ethical, cultural and philosophical issues surrounding the search for the 'book of life', focusing on the mapping of the human genome in Britain, the USA and Europe. It examines the impact of genetically modified crops, food and pharmacogenomics, along with the science and technology policy issues deriving from the human genome project. The authors investigate the potential risks and implications of the new genetics and conclude with a discussion of how nature may be reconfigured to underpin developments in health, commerce, state regulation and the law, both on a local and global scale.

Chapter 1

Introduction

The new genetics (including genetic engineering, mapping of human and other species, genetic diagnosis and therapy) forms the scientific basis of new technologies unlike any other, with significant implications for life in the twenty-first century. These geno-technologies directly affect us at a deeply personal level; they pose a threat to the boundaries which conventionally define selfhood and distinguish humans from other animals; they generate potentially novel risks and dangers, with possibly unforeseen, and often unknowable or irreversible outcomes; and they threaten the very basis of accepted understandings of culture and society. They also grow in a complex political, economic and organisational milieu involving science, medicine, commerce and the law in the context of late modern society characterised by risk, reflexivity and globalisation. The new genotechnologies therefore appear to question the very boundaries of Nature itself. Recognising how these boundaries are configured contributes to understanding how society reinvents them through imposing order, reimposing control, and providing space for decision-making and the development and application of policy. It also allows for a critical analysis of the degree to which such processes serve the interests of the many constituencies involved.

The New Genetics

The purpose of this chapter is to introduce the idea of the new genetics, and its historical relation to classical genetics and biotechnology. We outline why the new genetics is considered qualitatively different from other new technologies in terms of its impact. The communist geneticist J.B.S. Haldane in 1946 saw the future of genetics as being bound up with enumerating and locating all human genes and elucidating their biochemical functions; to provide us with ‘an anatomy and physiology of the human nucleus … [giving] the possibility of a scientific eugenics, … [it] may give us the same powers for good or evil over ourselves as the knowledge of the atomic nucleus has given us over parts of the external world’ (cited by Dawes 1952: 181). These were prescient words, but when spoken classical genetics was in no position to deliver on such goals; for that to happen a new genetics would need creating.

Elsewhere we have outlined how this ‘new genetics’ came into being (Glasner and Rothman 2003). The story in brief is this. Classical genetics developed during the first 50 years of the last century after the rediscovery in 1900 of Gregor Mendel’s work on the basic laws of inheritance. The familiar classical concepts and terminology of ‘gene’, ‘mutation’, ‘phenotype’ and ‘genotype’, and so forth were developed over several decades, along with a body of techniques such as linkage, mapping, and mutagenesis by radiation and chemicals. By the 1930s genetics was flourishing, and influencing and changing evolutionary theory, as well as spinning off sub-disciplines such as medical genetics. By the 1940s it was itself beginning to be influenced by the then new field of molecular biology, which focused attention on understanding the physical basis of life, and especially the gene. By the beginning of the 1950s several researchers were convinced that the answer lay in the structure of DNA. In 1953 James Watson and Francis Crick published their double helix model of DNA, based upon crystallographic work initiated by Rosalind Franklin and Maurice Wilkins; this has been hailed by some as ‘the scientific discovery of the century’, and is the point at which we can say a synthesis of genetics and molecular biology had arrived.

This discovery stimulated new lines of research producing new concepts and techniques with profound implications for genetics. These discoveries included messenger and transfer RNA, the genetic coding mechanism, replication, transcription and translation. To study such matters new laboratory research techniques had to be invented, amongst which were DNA sequencing, cloning, restriction enzyme, and DNA libraries. These and other methods made it possible to create recombinant DNA through genetic manipulation techniques. This marked not only a scientific turning point but also a technological and commercial one. Here scientifically we may speak of ‘the new genetics’, which takes classical genetics to a new level, the bio-molecular level. Technologically it allowed massive new possibilities, way beyond the breeding techniques utilising classical genetics. Commercially it opened up a new economic space within which novel products and processes might be created and marketed; biotechnology was the name applied to the industrial activity built on the new genetic technology.

Biotechnology

The term ‘biotechnology’ has, as Robert Bud (1993) has shown, been used since the early 20^th Century to mobilise the creation of technologies from living things. The early goals were mostly related to fermentation-based technology and products, such as Chaim Weizmann’s process for acetone production; followed in the post Second World War era by the great success of fermentation of antibiotics, which laid the foundation for today’s pharmaceutical industry. However, contemporary understanding of biotechnology has now come to be associated with the great scientific advances in recombinant DNA in the 1960s and 1970s. These encouraged the development of various techniques for manipulating genetic materials produced from certain species in the laboratory and transferring them to different organisms, usually bacteria, within which the transferred gene could be propagated. This technique, popularly known as genetic engineering, became the basis for a new biotechnology ‘industry’ spawning a host of new companies, particularly in the US, funded by excited venture capital and stock markets. The excitement impacted on politicians, and there were in the early 1980s throughout the industrialised world many government policy reports speculating on how biotechnology might be harnessed to industrial growth. These developments were not universally welcomed, some people fearing that the new technology might release novel and dangerous organisms into society and the environment. Consequently there were vigorous debates in some countries, notably the US and UK, about environmental, political, social and ethical issues leading to a regulatory regime for recombinant DNA (Krimsky 1982, Bennett et al 1986). Similar fears and questions are now voiced in the related but different context of genomics.

Genomics and the Human Genome Project

By the early 1980s researchers were beginning to search for and identify genes associated with particular diseases, such as the gene for cystic fibrosis and the gene for breast cancer. Initially such tasks were slow and tedious but the rewards were potentially great, and new technical advances began gradually to speed up the process. The ground was being prepared for achieving Haldane’s predicted goal of an ‘anatomy and physiology of the human nucleus’. By the end of the 1980s there was sufficient confidence to propose a Human Genome Project (HGP) to map and sequence all the human DNA, an enormously ambitious task given the technical resource at that time. It was then estimated that three billion base pairs would have to be sequenced, which would include perhaps 100,000 genes. The project would take 15 years and be carried out by an international consortium of laboratories at an estimated cost of $3 billion. As we shall see it was completed by 2003, two years ahead of schedule, and the number of genes proved to be far less than anticipated. The advent of the HGP placed genomics on the public agenda; genomics, amongst other things, deals with genes and their expression and so plays an important and increasingly important role in advancing the understanding of the causes of human diseases. President Clinton captured this vision in his 1998 State of the Union Speech when he said:

In the 1980s, scientists identified the gene causing cystic fibrosis; it took nine years. Last year, scientists located the gene that causes Parkinson’s disease – in only nine days! Within a decade gene chips will offer a road for the prevention of illnesses throughout a lifetime … A child born in 1998 may live to see the 22^nd Century.

Genomics will, it is predicted, be able to produce equally wonderful advances in agriculture, nutrition, criminology and other fields. That is the sunny side, is there a dark side to this vision?

The New Genetics: a Force for Good or Evil?

Haldane, it will be recalled, likened his vision for the future of genetics – now in part realised by the HGP – to nuclear power, ‘a force for good or evil’. This was an apposite analogy. During the first four decades of the twentieth century physics was revolutionised and by the end of the 1930s it was clear to the leaders that atomic power was a probability. The Manhattan Project turned this into a technical reality, and as Robert Oppenheimer put it, the scientists ‘learned sin’ (Snow 1981: 120). The moral distaste felt by some of the physicists who had worked on the Manhattan Project, such as Maurice Wilkins, pushed them towards the life sciences and so strengthened the development of biophysics. Later, as we shall see, laboratories that were linear descendants of the Manhattan Project were instrumental in laying much of the groundwork for the HGP. A path, tortuous certainly, led from the Manhattan Project to the HGP. The achievement of the goals of the HGP when linked to the technical resources of biotechnology, and information science provide new sources of knowledge for awesome powers. Nuclear power made it possible to destroy civilisation, the new genetics makes it possible to change our genetic nature.

Biology and classical genetics in an earlier era provided us with concepts such as race, and practices such as eugenics that have led to dreadful social consequences. Eugenics has been a leitmotiv in the history of genetics, even Haldane still looked towards a ‘scientific eugenics’. Not surprisingly, revisiting these issues in the light of the new genetics is uncomfortable. The Human Genome Diversity Project, proposed as a spin-off from the HGP, was shot down because it threatened political and ethnic interests. The eugenics of our era, might as Hilary Rose (1994) suggests, prove to be a ‘friendly’ free-market eugenics, as opposed to previous state-sponsored eugenics. Molecular biologist Lee Silver (1998) postulates that the market forces for genetic change in humans will prove so strong that in the future we might have two new social classes, the rich and genetically enhanced, and the poor non-enhanced. Stock (2002) also argues that governments will prove unable to prevent us ‘choosing our children’s genes’, whilst the science fiction film Gattaca (Columbia 1997) presented a dystopian vision of a society in which that was the norm. Fukuyama (2002) who famously pronounced the end of history, revised his thesis a decade later, in the light of advances in biotechnology and the new genetics, to proclaim we were now facing a ‘posthuman future’. On the broader economic front, critics such as Jeremy Rifkin (1998) are not convinced that growth in ‘genetic commerce’ will be an unmitigated blessing, and we witness in Europe and some Third World countries popular and governmental opposition to the introduction of genetically manipulated crops developed by US firms. The question of whether or not the geno-technologies are truly qualitatively different in their potential impact from other new technologies, such as for example information technologies, is frequently raised. Our position is that because they offer the possibility of changing Nature at its very heart, the germline, their assessment and regulation needs to be taken extremely seriously. It is not a question of exaggeration and overblown metaphors such as ‘Frankenstein crops’ or ‘playing God’ but a justifiable concern about crossing certain boundaries without the most thorough and publicly transparent examination of the consequences.

Structure and Distinctiveness of this Book

This book is organised around three related themes, following this brief introduction. In the first, accomplishing genomic research, which covers Chapters 2 to 4, we discuss the technical, cultural and philosophical issues surrounding the search for the ‘book of life’. We look in detail at the worldwide attempt to map the entire make-up of the human genome, paying particular attention to the experience in the US and UK. In the second, commercialising the natural world, in Chapters 5 to 7, we focus on the genetically modified crops and food, and pharmacogenomics, and the rise of new genomics firms. This raises science and technology policy issues deriving from the Human Genome Project and their implications for patenting ‘life’ itself. The final part, mainly in Chapter 8, shifts the focus onto democratising involvement in decision-making in this key area, which affects everyone at a personal level. In particular we investigate the potential risks of the new genetics, and evaluate recent attempts, such as citizens’ juries, to involve the public in discussing their implications. The book concludes with a discussion of the process of stabilising the HGP through black-boxing in order to develop a new genomics paradigm as the basis of a vision for the future. The discussion oscillates throughout between the local and the global reflecting the complexities of the issues involved, and in particular discusses developments in the UK, EU and USA.

This book has a number of distinctive features. It concentrates on one of the most controversial of the new technologies, which will impact on us all. Resources used in our study include the theoretical insights developed by the social studies of science and technology and science policy analysis (see inter alia Jasanoff et al, 1995), combined with results from a range of empirical work undertaken by the authors and colleagues using a variety of methodologies. The study of the many different aspects of the new genetics and society has benefited from recent advances in qualitative methodology as the issues raised to a large extent rest, as noted above, on the boundaries between selfhood and Nature. Hence most of the empirical research that underpins this work uses a variety of qualitative methods; focus groups, interviews, and participant and non-participant observation. Where quantitative methods such as large-scale surveys have been carried out, these have been helpful mainly in making the findings of the qualitative data more generalisable. In this way the book seeks to contribute to developing both the breadth and depth of existing research.

In Chapter 2, we show how much of the drive to establish the Human Genome Project was exterior to the field of human genetics. Certain groups, including scientists and bureaucrats, were able to mount a political lobby successfully, and enlist supporters in government circles, research agencies and media, in the teeth of opposition from many members of the biological sciences community. The scientific case for the megascience project was buttressed by organisational and national prestige, political, economic and health reasons. We also seek to demonstrate the importance of instrumentalities and technology in the HGP.

In Chapter 3 we examine the evolution and development of the HGP as it progressed from launch to completion in 13 years, two years ahead of schedule. The period from 1991–1997 saw steady progress in the establishment of mapping and sequencing centres dominated by public consortia that emphasised accuracy and the rapid public dissemination of data. The period 1998–2003 saw an intensification and speed-up of sequencing consequent upon the arrival of a privately funded rival. The ensuing struggle and competition throws up for study several important and economic issues that highlight stresses in the traditional ethos of science. In the following chapter we discuss the difficulties associated with managing the data explosion generated by the mapping project and its applications, including the issues of access, privacy and discrimination, especially in the context of the rapidly expanding number of Genetic Data Banks in the UK and abroad. We also focus in part on the attempts to deal with the data explosion by scientists working collaboratively using electronic forms of communication.

In Chapter 5 we explore how new genetic technologies cannot be divorced from the socially and politically co-constructed nature of social life by focusing on a related aspect of their commercialisation, the growing, international controversy over genetically modified food and crops, the role of multinationals such as Monsanto, and the Pusztai affair in the UK. We also discuss the ways in which the wider public can become engaged in such controversies. In the next chapter we discuss the process of globalisation and the role of the nation state, and their implications for the divide between the rich globalising North and poor South. We show how this affects not only their development, but also the distribution of health care, and initiates a process of commodification of the natural world.

In Chapter 7 we analyse the commodification and commercialisation of genomics. The emerging new models of innovation and technology transfer are described alongside the issues that they raise for public research institutions, in particular we examine the problems surrounding DNA patenting. The final section of the chapter looks at specialised genomics firms and the successes and failures of the business models that they have adopted. Chapter 8 shows the dangers and misunderstandings which arise from characterising the public as ignorant about the complexities of the potential risks raised by the new genetics, and how these might affect people in the future. We show that socially robust knowledge needs to be developed, and evaluate some of the new ways in which this can be facilitated. One recent method, the citizens’ jury to involve the people of Wales in a debate about the introduction of genetic testing for common disorders into the National Health Service, is taken as a case study.

The book concludes by developing the arguments and insights discussed in earlier chapters that recognise that the new genetics is at once a global, multinational, multi-billion-dollar enterprise, and a very private and personal focus for concern. In the context of the completion of the HGP, the emergence of a post-genomic research paradigm, and the translation of biology into ‘big science’, we explore the ways in which these complex and multifaceted social processes are likely to unfold in a variety of policy arenas. In doing so we focus on the visions for the future that is the basis of wide-ranging debates in Britain and the USA.

Chapter 2

The Hunt for the Holy Grail: Compiling the Book of Life

‘The total human sequence is the grail of human genetics.’ (Walter Gilbert cited by Cook-Deegan 1994: 88.)

In this chapter we examine the origins of the Human Genome Project (HGP), and how political, scientific and technological forces shaped it. In particular we seek to show how this megascience project, seeking to sequence the entire human genome, was dependent on, and co-evolved with, developments in the technologies of practical research, which we term instrumentalities (Price 1984).

An HGP was not on the research agenda or wish list of most biologists in the early 1980s, certainly it was not a necessary consequence of the then current state of human genetics, the scientific field which one might imagine to be the one with the most to gain from it. Yet ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of Tables
• Acknowledgements
• Chapter 1 Introduction
• Chapter 2 The Hunt for the Holy Grail: Compiling the Book of Life
• Chapter 3 Doing the Human Genome Project
• Chapter 4 Managing Genetic Information
• Chapter 5 ‘Frankenstein’ Foods, or the Revenge of the Genetically Modified Potatoes
• Chapter 6 Globalisation and the Transformation of Nature
• Chapter 7 From Commodification to Commercialisation
• Chapter 8 Rights or Rituals: Involving the People
• Chapter 9 New Genetics, New Millennium, New Society?
• Bibliography
• Index