Reordering Life: Knowledge and Control in the Genomics Revolution

by Stephen Hilgartner

Overview

How the regimes governing biological research changed during the genomics revolution, focusing on the Human Genome Project.

The rise of genomics engendered intense struggle over the control of knowledge. In Reordering Life, Stephen Hilgartner examines the “genomics revolution” and develops a novel approach to studying the dynamics of change in knowledge and control. Hilgartner focuses on the Human Genome Project (HGP)—the symbolic and scientific centerpiece of the emerging field—showing how problems of governance arose in concert with new knowledge and technology. Using a theoretical framework that analyzes “knowledge control regimes,” Hilgartner investigates change in how control was secured, contested, allocated, resisted, justified, and reshaped as biological knowledge was transformed. Beyond illuminating genomics, Reordering Life sheds new light on broader issues about secrecy and openness in science, data access and ownership, and the politics of research communities.

Drawing on real-time interviews and observations made during the HGP, Reordering Life describes the sociotechnical challenges and contentious issues that the genomics community faced throughout the project. Hilgartner analyzes how laboratories control access to data, biomaterials, plans, preliminary results, and rumors; compares conflicting visions of how to impose coordinating mechanisms; examines the repeated destabilization and restabilization of the regimes governing genome databases; and examines the fierce competition between the publicly funded HGP and the private company Celera Genomics. The result is at once a path-breaking study of a self-consciously revolutionary science, and a provocative analysis of how knowledge and control are reconfigured during transformative scientific change.

Product Details

ISBN-13:	9780262035866
Publisher:	MIT Press
Publication date:	05/19/2017
Series:	Inside Technology
Pages:	368
Product dimensions:	6.20(w) x 9.10(h) x 1.00(d)
Age Range:	18 Years

About the Author

Stephen Hilgartner is Professor of Science and Technology Studies at Cornell University.

Table of Contents

Acknowledgments xi

List of Abbreviations xiii

1 Introduction 1

Transformative Scientific Change 3

Knowledge-Control Regimes 8

Governing Frames 11

Multiple Regimes 15

Agency and Action 16

Stability and Change 18

Research Methods 19

The Chapters Ahead 22

2 Envisioning a Revolution 25

The Genomics Vanguard 27

Building a New Biology 31

Sociotechnical Challenges 40

Organizational Complexities 47

Changing Laboratories 52

Mapping Laboratory, 1988 52

Pilot Sequencing Projects, circa 1991 56

Sequencing Center, July 2000 58

3 Laboratories of Control 63

The Regime of the Laboratory 64

The Perimeter of the Laboratory 67

Controlling Transfers and Transferring Control 69

Face-to-Face Interaction 70

Requests for Data and Materials 74

Presentations at Meetings 78

Collaboration Regimes 82

Constructing Collaborations 83

Structural Fragility 87

Conclusion 89

4 Research Programs and Communities 91

Building a Regime for the US Program 92

Defining the Scope of the Project 93

Building New Control Relationships 96

Setting Standards 98

Monitoring Productivity and Progress 102

Resistance 104

Aligning with Molecular Biology 107

Becoming Durable 109

Building the Reference Library System 110

Orderly Libraries 111

Orderly Translaboratory Relations 114

A Road Not Taken 118

Conclusion 120

5 Objects of Transformation 123

Object 1 The cDNA Strategy 124

Object 2 Expressed Sequence Tags 128

Object 3 EST Patents 131

Imagined Trajectories 135

Configuration Power 136

International Contention 137

Object 4 Proprietary EST Databases 139

The HGS Nexus 141

Query-Based Collaborations 145

Object 5 A Privately Funded, Public EST Database 149

Object 6 ESTs as Ordinary Tools 150

Conclusion 152

6 Regime Change and Interaction 155

Regime 1 Staff-Driven Collecting (1979 to the early 1990s) 156

The First Destabilization: Exponential Growth 158

Regime 2 Mandatory Direct Submission (1988 to the present) 160

The Second Destabilization: Large-Scale Sequencing and the "When" Question 165

Regime 3 The Six-Month Rule (1992 to 1996) 169

The Third Destabilization: Anticipated Coordination Problems 172

Regime 4 The Bermuda Principles (1996 to 2003) 172

The Fourth Destabilization: Disputes over Legitimate Use 175

Regime 5 The Fort Lauderdale Agreement (2003) 178

Conclusion 181

7 Shaping News and Making History 185

From Mapping to Sequencing 186

Choosing a Sequencing Strategy 189

Announcing the New Company, May 10-13, 1998 193

The Announcement 193

The US Genome Program's Initial Response 197

The Wellcome Trust's Response 199

Cold Spring Harbor, May 13-17, 1998 201

Competing Laboratories, Competing Narratives 206

Scaling Up 209

Ceremony and Celebration, June 2000 to April 2003 215

A Symbolic Resource 221

8 Conclusion 223

Knowledge and Control 225

The Dynamics of Change 226

Appendix: Fieldwork and the Control of Knowledge 233

Research Interviews 233

Participant Observation 240

Documents 246

Notes 249

References 289

Index 315

What People are Saying About This

Ulrike Felt

Reordering Life is a fascinating book, unfolding a subtle, theoretically deep, and empirically rich account of the Human Genome Project. It represents a major contribution to a vast and growing body of science and technology studies literature covering the 'genomics revolution.' Hilgartner skillfully uses this highly visible big science endeavor to unpack the coproduction of deep scientific and societal transformations brought about through this project. This book will become a standard text engaging with the entanglement of epistemic, material, and political processes, and with the problems of governance that arise in concert with new genomic knowledge and technology.

Endorsement

Reordering Life is a fascinating book, unfolding a subtle, theoretically deep, and empirically rich account of the Human Genome Project. It represents a major contribution to a vast and growing body of science and technology studies literature covering the 'genomics revolution.' Hilgartner skillfully uses this highly visible big science endeavor to unpack the coproduction of deep scientific and societal transformations brought about through this project. This book will become a standard text engaging with the entanglement of epistemic, material, and political processes, and with the problems of governance that arise in concert with new genomic knowledge and technology.

—Ulrike Felt, Professor of Science and Technology Studies, University of Vienna; coeditor of The Handbook of Science and Technology Studies, fourth edition

From the Publisher

Reordering Life provides a fascinating account of the making of a new kind of biology: one in which technology development is rapid, datasets big, and science 'open.' Hilgartner brilliantly shows how this new kind of biology has become possible through struggles over knowledge, control, and collaboration that shaped scientific outputs at the same time as they produced new standards to evaluate—and valorize—the practices that create them.

—Barbara Prainsack, Department of Global Health & Social Medicine, King's College London

This is the first in-depth assessment of the Human Genome Project from a thorough science and technology studies perspective. A masterpiece.

—Hans-Jörg Rheinberger, Director emeritus, Max Planck Institute for the History of Science, Berlin; coauthor of A Cultural History of Heredity

Reordering Life is a fascinating book, unfolding a subtle, theoretically deep, and empirically rich account of the Human Genome Project. It represents a major contribution to a vast and growing body of science and technology studies literature covering the 'genomics revolution.' Hilgartner skillfully uses this highly visible big science endeavor to unpack the coproduction of deep scientific and societal transformations brought about through this project. This book will become a standard text engaging with the entanglement of epistemic, material, and political processes, and with the problems of governance that arise in concert with new genomic knowledge and technology.

—Ulrike Felt, Professor of Science and Technology Studies, University of Vienna; coeditor of The Handbook of Science and Technology Studies, fourth edition

Barbara Prainsack

Reordering Life provides a fascinating account of the making of a new kind of biology: one in which technology development is rapid, datasets big, and science 'open.' Hilgartner brilliantly shows how this new kind of biology has become possible through struggles over knowledge, control, and collaboration that shaped scientific outputs at the same time as they produced new standards to evaluate—and valorize—the practices that create them.

Editorial Reviews

Hilgartner's discussions of the regimes associated with the cDNA and ESTs break significant new ground, and present a strikingly original and compelling perspective on the HGP and its development.—History and Philosophy of the Life Sciences—

The political metaphors that Hilgartner unspools from the claims of a genomics revolution, after due consideration of the stakes of designating scientific discoveries as revolutionary..., are both apt and provocative for thinking about the operation of biology.... Through his fieldwork, historical scholarship, and theoretical framing, Hilgartner provides a fascinating account of how a new 'sociotechnical' vanguard sought to fashion a new future for biology, and one which provides a rich set of methods for other scholars.

—Journal of the History of Biology—

Science and technology studies scholar Stephen Hilgartner helps us understand the interactions between science and the social in his excellent book Reordering Life: Knowledge and Control in the Genomics Revolution. He rigorously and critically synthesizes 15 years of ethnographic research to produce a highly insightful account of the historical revolution of the Human Genome Project and genomic science.

—Quarterly Review of Biology—

Reordering Life is a must-read book for historians of science and technology who study the norms, conventions, and political aims of epistemic communities. Hilgartner highlights and carefully examines many thought provoking relationships between public and private entities, scientific data and knowledge production, publication and database submission, and academic credit versus service to the scientific community. Particularly interesting is his examination of various instances of friction and resistance among actors in knowledge-control regimes.

—Technology and Culture—

The book is exceptionally well written and readable also for those with no specific prior insights into genomics and genomic technology.... It is the concept of knowledge control regimes that renders the book relevant to even broader academic audiences. Hilgartner's theoretical framework has potential to be applied to a range of topics of burning contemporary relevance, both in the public communication of science and the study of the culture and organization of knowledge production—with big data and open access being only two cases in point. My humble guess is that most academic readers interested in the dynamics of knowledge in contemporary societies will put this book aside with a new inspiration for their own work.

—Maximilian Fochler, University of Vienna, Public Understanding of Science—

An excellent account of the knowledge processes surrounding the HGP, and it will be the definitive account going forward.

—Contemporary Sociology—

The book's major conceptual contribution is Hilgartner's development of the concept of 'knowledge-control regimes', namely, law-like structures whose role is to regulate the production and use of knowledge.... Through his theoretical framework, Hilgartner invites us to disentangle the various epistemic, material or political processes involved in scientific and technological endeavours, by detailing a roadmap of elements to examine: (i) the agents – what are the agents constituted by the knowledge-control regime, and what is their role?; (ii) the control-relationships – what are the regimes and practices that allocate burdens and entitlements among agents?; (iii) accountability – what are the forms of accountability defined by the regime that hold the agents together?; and (iv) resistance and agency – what forms of resistance do the knowledge-control regime encounter, and what does it say about the type of agent involved in the regime?

—Sociology of Health and Illness—

Reordering Life is a pioneering account of an achievement – the HGP – that has shaped the course of contemporary biomedicine. The passage of time has enabled Hilgartner to follow its development as an anthropologist and reflect on the HGP with historical distance. His conclusions are thus of interest to those looking at biomedicine from a multidimensional perspective.

—New Genetics and Society—

Hilgartner's discussions are thorough and give a sense of the complexity of the project and the many issues that emerged as the sequences were worked out.

—Isis—

From the Publisher