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- Herausgeber: John Wiley & Sons
- Kategorie: Geisteswissenschaft
- Serie: PRS - Polity Resources series
- Sprache: Englisch
From DNA sequences stored on computer databases to archived forensic samples and biomedical records, bioinformation comes in many forms. Its unique provenance - the fact that it is 'mined' from the very fabric of the human body - makes it a mercurial resource; one that no one seemingly owns, but in which many have deeply vested interests. Who has the right to exploit and benefit from bioinformation? The individual or community from whom it was derived? The scientists and technicians who make its extraction both possible and meaningful or the commercial and political interests which fund this work? Who is excluded or even at risk from its commercialisation? And what threats and opportunities might the generation of 'Big Bioinformational Data' raise? In this groundbreaking book, authors Bronwyn Parry and Beth Greenhough explore the complex economic, social and political questions arising from the creation and use of bioinformation. Drawing on a range of highly topical cases, including the commercialization of human sequence data; the forensic use of retained bioinformation; biobanking and genealogical research, they show how demand for this resource has grown significantly driving a burgeoning but often highly controversial global economy in bioinformation. But, they argue, change is afoot as new models emerge that challenge the ethos of privatisation by creating instead a dynamic open source 'bioinformational commons' available for all future generations.
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Contents
Cover
Title Page
Copyright
Acknowledgements
Abbreviations
1 Genesis: What is Bioinformation?
Introduction
Molecular Biology and Bioinformational Metaphors
What is Bioinformation?
Registers of Bioinformation
Political Economies of Bioinformation
Chapter Synopses
Conclusion
Notes
2 Provenance: Where Does Bioinformation Come From?
Introduction
Where Does Bioinformation Come From?
Building Biobanks for Medical and Scientific Research
Repurposing Existing Collections
Forensic Biobanks
Personal Biobanking
Why Donate?
Data Protection and Anonymity
Ethics and Informed Consent
Provenance and Bioinformatic ‘Quality’
Conclusion
Notes
3 Property: Who Owns Bioinformation?
Introduction
Owning Bioinformation
Making Biotechnological Inventions
Patenting Immortal Cell Lines
Population Wide Genetic Research
Invention or Discovery?
Myriad: Patenting Breast Cancer Genes
Conclusion
Notes
4 Markets: Who Consumes Bioinformation?
Putting Bioinformation to Use
Commercializing Bioinformation
Distributing the Benefits of Bioinformation
Conclusion
Notes
5 The Big Data Revolution
Introduction
The Big Data Agenda
How Is Big Data Generated?
The Potential of Big Data: Hope or Hype?
Predictive Analytics
The Social Implications of Predictive Failures: Biomarkers and Genealogy
Collapse of the Public and Private Domains in the Big Data Economy
Conclusion
Notes
6 Bioinfomatic Futures: The Datafication of Everything?
Introduction
Big Data for Whom?
Building a Bioinformational Commons
Governing a Bioinformational Commons
Freeing Big Data?
The ‘Algorithmically Defined Self’: Our Bioinformatic Future?
Hypercollection and Convergence
Conclusion
Notes
Selected Readings
Index
End User License Agreement
Guide
Cover
Table of Contents
Begin Reading
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Resources Series
Anthony Burke, Uranium
Peter Dauvergne & Jane Lister, Timber
Andrew Herod, Labor
Michael Nest, Coltan
Elizabeth R. DeSombre & J. Samuel Barkin, Fish
Jennifer Clapp, Food, 2nd edition
David Lewis Feldman, Water
Gavin Fridell, Coffee
Gavin Bridge & Philippe Le Billon, Oil, 2nd edition
Derek Hall, Land
Ben Richardson, Sugar
Ian Smillie, Diamonds
Adam Sneyd, Cotton
Bill Winders, Grains
Bioinformation
BRONWYN PARRY ANDBETH GREENHOUGH
polity
Copyright © Bronwyn Parry, Beth Greenhough, 2018
The right of Bronwyn Parry and Beth Greenhough to be identified as Authors of this Work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988.
First published in 2018 by Polity Press
Polity Press65 Bridge StreetCambridge CB2 1UR, UK
Polity Press101 Station Landing, Suite 300Medford, MA 02155, USA
All rights reserved. Except for the quotation of short passages for the purpose of criticism and review, no part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.
ISBN-13: 978-1-5095-0549-4
A catalogue record for this book is available from the British Library.
Library of Congress Cataloging-in-Publication Data
Names: Parry, Bronwyn, author. | Greenhough, Beth, author.
Title: Bioinformation / Bronwyn Parry, Beth Greenhough.
Description: 1 | Cambridge, UK ; Malden, MA : Polity, 2017. | Series: Resources | Includes bibliographical references and index.
Identifiers: LCCN 2017014229 (print) | LCCN 2017031884 (ebook) | ISBN 9781509505487 (Mobi) | ISBN 9781509505494 (Epub) | ISBN 9781509505456 (hardback) | ISBN 9781509505463 (paperback)
Subjects: LCSH: Bioinformatics. | Biology--Data processing. | BISAC: POLITICAL SCIENCE / International Relations / Trade & Tariffs. Classification: LCC QH324.2 (ebook) | LCC QH324.2 .P38 2017 (print) | DDC 570.285--dc23
LC record available at https://lccn.loc.gov/2017014229
The publisher has used its best endeavours to ensure that the URLs for external websites referred to in this book are correct and active at the time of going to press. However, the publisher has no responsibility for the websites and can make no guarantee that a site will remain live or that the content is or will remain appropriate.
Every effort has been made to trace all copyright holders, but if any have been inadvertently overlooked the publisher will be pleased to include any necessary credits in any subsequent reprint or edition.
For further information on Polity, visit our website: politybooks.com
Acknowledgements
We would like to thank all those who have contributed to ongoing discussions over the years on the nature of bioinformation, its emerging markets and the social, ethical and legal implications of its use as a resource in contemporary society. These include: Barbara Prainsack, Catherine Waldby, Kaushik Sunder Rajan, Nik Rose, Jenny Reardon, Gail Davies, Emma Roe, Catherine Nash, Klaus Hoeyer, Chris Philo, Sarah Whatmore, Mary Ebeling, Nick Bingham, Lochlann Jain, Steve Hinchliffe, Tim Brown and Jamie Lorimer. We have benefited tremendously from your insights, which have really helped to refine our thinking on this complex issue. Our wonderful editors at Polity, Louise Knight and Nekane Tanaka Galdos, have been so encouraging, supportive and patient, and we remain indebted to them for their creative commissioning of this work and careful stewardship to completion. Colleagues in our respective Departments of Global Health and Social Medicine at King’s College London, and Geography and the Environment at Oxford have been equally generous in their support of this project. We are very grateful to Keble College, Oxford for providing a visiting fellowship for Bronwyn that first helped us get this project off the ground. Katya Baker provided invaluable research assistance throughout, for which we give our sincere thanks.
Lastly, Bronwyn would like to thank her family – Sally, Alex and Jacob – for their unending love and for ever so patiently providing the time and space needed to conceptualize, research and write this book. She would also like to thank Beth for being such a brilliant collaborator and Andy for helping her to find time away from her young family to work on this project. Beth would like to thank Karl Benediktsson from the University of Iceland and all those who supported, participated in and contributed to her early doctoral work on Iceland’s Health Sector Database. She would like to thank Bronwyn for inviting her to be involved in this project and putting up with her erratic contributions during maternity leave. Last, but by no means least, Beth is very grateful to Andy, Molly and Fergus for allowing her the time and space to realize this work.
Abbreviations
ANTHC
Alaska Native Tribal Health Consortium
CBD
Convention on Biological Diversity
CCTV
close circuit television
CDC
Centre for Disease Control and Prevention (US)
cDNA
complementary DNA
CEPH
Centre d’étude du polymorphisme humain (France)
CF
cystic fibrosis
CFS
chronic fatigue syndrome
DNA
deoxyribonucleic acid
EGP
Estonian Genome Project
EPIC
European Prospective Investigation into Cancer and Nutrition
FAO
Food and Agriculture Organization of the United Nations
FDA
Food and Drug Administration (US)
FOSS
free and open source software
gDNA
genomic DNA
GWAS
genome-wide association studies
HGDP
Human Genome Diversity Project
HIPAA
Health Insurance Portability and Accountability Act (US)
HMP
Human Microbiome Project
HRT
hormone replacement therapy
HTLV
human T-lymphotrophic virus
HUGO
Human Genome Organisation
HUNT
Nord-Trøndelag Health Study (Norway)
HSCIC
Health and Social Care Information Centre (UK)
HSD
Health Sector Database (Iceland)
NCBI
National Centre for Biotechnology Information (US)
NHS
National Health Service (UK)
NICE
National Institute of Health and Clinical Excellence
NIH
National Institute of Health (US)
ME
myalgic encephalomyelitis
MOOM
Massive Open Online Medicine
PKU
phenylketonuria
P3G
Public Population Project in Genomics
RAFI
Rural Advancement Foundation International
RNA
ribonucleic acid
SNPs
single nucleotide polymorphisms
SRA
Sequence Read Archive
TMS
Tandem Mass Spectrometry
TRIPS
Trade Related Intellectual Property Rights
UK
United Kingdom
US
United States
WTO
World Trade Organization
CHAPTER ONEGenesis:What is Bioinformation?
Introduction
On 17 November 1903, the London Daily News led with an important crime story with the title Jewel Haul Sequel: The Fingerprint Clue.1 Contained within the report was a description of the arrest of one Henry Elliot, aged 26, on suspicion of the robbery of jewellery worth an estimated £5,000 from the auction house of Messrs. Knight, Frank and Rutley of Conduit Street. Arrested as he lay in his bed, Elliot denied the charges, asserting boldly, ‘That’s a lie!’. Chief Inspector Drew assured him it was not – that his presence at the scene had been established by the detection of ‘traces of finger marks’ that, when sent to Scotland Yard’s newly formed Finger-Mark Impression Department, were confirmed as Elliot’s very own. A search of his lodgings, which revealed the hoard, served to seal his fate. Although the article offers no account of it, we cannot but wonder what Elliot must have thought about this new technique that had turned his own body into a traitorous witness of his nefarious activities. How was it possible that information about his identity and his whereabouts could have been divined from mere fragments of his bodily material shed miles away from his home? What other information about his fate might be similarly derived?
The science of fingerprint identification was then still in its infancy, and its success relied on an allied technique of anthropometric classification developed in France in 1879 by Parisian police officer Alphonse Bertillon. Bertillon came from a family of notable statisticians and demographers, and he shared their interests in statistical probability, measurement and systems of classification, believing that they could be brought to bear in improving criminal identification. Drawing on these techniques, he devised a system of physical measurements of the head and body and notation of individual markings such as tattoos and scars. These measurements were entered onto cards and accompanied with a photographic portrait – the image that we now know as ‘the mug shot’ – that was used to create a unique descriptor and record of the offender.
These cards were then systematically filed and cross-indexed so that they could be easily retrieved. The utility of this new system of anthropomorphic identification was immediately evident to commentators of the day. As one journalist for the Standard newspaper astutely noted: ‘[B]y taking the measurements of a person it becomes possible to ascertain his identity even if he is already included in the records under any name whatever … [T]he highly ingenious mode of classification by which the cards are deposited in a cabinet is the most admirable part of the system, providing, as it does, a ready and perfect means of reference amongst many thousands of records.’2 However, Bertillon’s method of obtaining these physical measurements was rather laborious to perform, requiring specialized technical equipment that needed to be constantly recalibrated. By harnessing it to eugenicist Francis Galton’s emergent, much more efficient method of finger printing, an exceptionally powerful new technology was born for divining information about individuals – their identity, experiences and fate – from their own bodily materials.3
Molecular Biology and Bioinformational Metaphors
This enterprise was not, however, confined solely to the world of criminal activity and what was later to become forensic science. The question of how an individual’s physiology could inform understandings of their life experience was, at virtually the same historical moment, also beginning to preoccupy those working in the new discipline of molecular biology. As the century progressed, a series of key breakthroughs improved understanding of genetic disease. The rediscovery of Mendel’s laws of hereditary inheritance, Avery’s discovery that genes are made up of DNA, and Watson, Crick and Franklin’s later elucidation of DNA’s double helical structure all allowed scientists to begin explicating the primary relationships and mechanisms that guide biological replication and function. A key set of questions animated much of this research. How do genotypes (the specific genetic make-up of individuals) affect phenotypes (the observable characteristics of that individual)? Are phenotypes genetically predetermined or can they be shaped by environmental interactions? How are biological messages or ‘instructions’ conveyed within an organism?
In order to find concepts and language capable of capturing the complexities of these processes, scientists drew on a number of metaphors that were popular at the time in the fields of cybernetics and communication theory. They began to describe DNA as containing genetic ‘code’ that signals to cells how they should operate or behave. This idea that biological material could contain information that directs the function of the organism was further cemented by the fact that this genetic code was signified by the letters of DNA’s four nucleotide bases: adenine, cytosine, guanine and thymine. The resultant strings of letters (ACGT) that are used to describe particular sequences of DNA thus appear as a kind of language or expressed information. Much debate later ensued over whether DNA was actually a form of information or whether it simply acted as a means of conveying biological instructions that we like to characterize as ‘information’.4 Although that question has not, and perhaps will never be, fully resolved, it is clear that informational metaphors such as ‘transcription’, ‘translation’, ‘coding for’ and ‘scripting’ have since become very popular and powerful tropes for describing the genetic mechanisms and outputs that shape all of biological life. Use of the term ‘bioinformation’, which first entered public debate and reportage during the 1980s, has grown exponentially since then. It remains, however, a term that is, in many respects, rather poorly defined. So what exactly is ‘bioinformation’?
What is Bioinformation?
A casual perusal of the internet reveals the many ways in which the term bioinformation is currently employed. It has been used to refer to DNA sequences stored on computer databases, archived pathological samples, biomedical records, the results of clinical trials and even pharmaceutical consumption patterns. Other references are made to ‘genetic information’. This is defined as information derived from an individual’s genetic tests, or from genetic tests taken by their family members, and can include information about the manifestation of a disease or disorder in that family’s medical history. Bioinformation has also been used to describe information obtained from forensic and medical examinations, such as that contained in reports and notes documented in patient and criminal records. Yet another important form of bioinformation is ecological data derived from observational or field studies of human, animal, plant or microbial populations that provides information on habitats, prevalence and incidence of disease, mortality and the like.
It might seem, at first glance, that there are basically two kinds of bioinformation; the first we could think of as derivative, the second as descriptive. ‘Derivative’ bioinformation appears to be the kind that is derived directly from the organism or the individual DNA sequence information, for example. The second, ‘descriptive’ bioinformation, might be thought to include forms of information that we use to describe the biology of individuals and their way of life: information about their response to their environment, experience of disease, risk of mortality or social identity, for example. These two kinds of bioinformation seem to exist in two distinct registers: the first (DNA embedded in tissues) seems ‘fleshier’, the latter (such as medical records) ‘wordier’. The resources that Polity has, to date, focused on in the series of which this book is one, such as coffee, gold or food, seem to be much less complicated entities, existing simply as physical goods that are traded as such in formal marketplaces. Their identities seem, in this respect at least, to be much more fixed: they are what they are. Bioinformation proves much harder to pin down. One of its unique characteristics, as we shall see, is that it can exist in many different material forms and can thus operate across many different ‘registers’ simultaneously. First, however, we need to extract bioinformation from its source.
The bodily structure of fleshy living organisms can provide all manner of information that may have utility in scientific or social endeavours. One of the primary scientific enterprises of the latter part of the twentieth century was to develop sophisticated new technologies for making this information available to others. There were three key parts to this work. The first involved finding ways of stabilizing fleshy, corruptible tissue and presenting it in more manageable forms, such as cryogenically frozen tissue or cell lines. The second involved developing techniques for examining or ‘reading’ the many varieties of biological information that could be derived from such investigations. These included, for example, finding methods for analysing the genetic composition of the tissue and establishing how it reacted on exposure to different substances such as drugs; the former was enabled by DNA or RNA sequencing, the latter via high throughput screening. Other examples include methods for tracking and tracing the behaviour of populations over space and time, in particular the surveillance of those seen as presenting a threat to the state. The third involved finding ways of presenting this biological information about organisms or populations in more standardized and portable forms; for example, electronic records stored on computer databases.
This task of converting bioinformation into ‘data’ that can be copied and circulated electronically became the responsibility of those working in the emerging field of bioinformatics. Rapid advances in computing and information technologies gave biologists, or, more accurately, biologists and their data science collaborators, the capacity to process and begin to interpret genetic code. This in turn led to the reconfiguration of biology as a data-driven information science.5 Much of this work has involved devising or refining techniques for computer-based storage, manipulation, modelling and visualization of what is termed ‘biological data’. This is defined as data or measurements derived from the examination of biological sources that are stored or exchanged in a digital form. However, even ‘biological data’, so described, comprises more kinds of information than one might think. As John Wooley and Herbert Lin suggest, the information associated with a biological entity could include ‘two-dimensional images, three-dimensional structures, one-dimensional sequences, annotations of these data structures, and so on’.6
It is enticing to imagine that bioinformation subsists a priori, that is to say that it exists within organisms as something that is both present and determinate and simply awaiting discovery through investigation. However, as several commentators helpfully remind us, this is not the case. Information about biological organisms (including human beings) – their internal composition, structure, function, behaviour and disposition – exists, but can only be ‘made available in the world’ by first rendering it as data of some kind. Data, as Rob Kitchin suggests, consists of ‘raw elements that can be abstracted from phenomena and measured and recorded in various ways’. However, given that these data points constitute simply a selection of the total sum of all the information available, they necessarily remain ‘inherently partial, selective and representative’.7
Those who generate bioinformational data are aware that, in order for it to be widely circulated and used, it first needs to be, as philosopher of science Sabina Leonelli puts it, ‘packaged’ so it can ‘travel beyond the boundaries of their own investigations’.8 These data journeys prove crucial, Leonelli argues, as
[they] don’t merely affect the interpretation of the data: they determine what counts as data and for whom in the first place … [such decisions] are made on the basis of the interests of the specific individuals involved, the materials and formats of the objects in question, the ethos of the relevant communities, existing standards of what counts as reliable data, conditions for data access and use, and shifting understandings of data ownership and value.9
In other words it is not possible to arrive at a ‘context-inde-pendent’ definition of biological data because it is always relational: what data is depends on who uses it, how, and for what purpose.
So what kind of a resource is bioinformation then? Is it bodily or informational, material or immaterial, private or public? Perhaps the best way to grasp its complex existence is to understand that it is neither material nor immaterial but, rather, materialized in different ways at different points in its existence. The question of how best to describe the biological information of interest will necessarily shape a researcher’s decisions about how that information is derived and in what form it is best presented to the world. Distinctions between what is ‘derivative’ and what is ‘descriptive’ bioinformation therefore ultimately collapse as they are mutually constituted. Bioinformation may appear at different moments to be more derivative or more descriptive, fleshier or wordier, but in fact it usually exists, in any given moment, in a multiplicity of forms. An example would be information on tumours found in pathological slides.
Pathological slides (see figure 1.1) consist of finely sliced human tissue that has been stained and mounted between pieces of glass. These slides are then scanned using electron microscopes. The resultant images, which we can think of as a kind of technologized artefact of the tissue, are then digitized and numerically analysed using computer algorithms. These algorithms automate the manual counting of particular structures within the tissue, allowing the technician to detect the presence of tumours, the incidence of which is recorded in a dataset. The scan, the algorithm, the slide and the dataset all contain valuable bioinformation – it is just instantiated and thus made available in different ways, at different times and places, according to the needs of its authors and consumers. Bearing all these complexities in mind, we can nevertheless still arrive at a useful definition of this elusive resource. Bioinformation, we suggest, is a term that refers to all information, no matter how constituted, arising from analyses of biological organisms and their behaviour, that can be used to elucidate their structure or function, identify individuals, or differentiate them from each other. Although, as we note, valuable sets of biological data can and have been constructed from ecological and environmental studies of animal, plant and microbial organisms and populations, we are, in this work, focusing primarily on the fate of bioinformation sourced from human beings.10
Figure 1.1 Example of a pathological slide
Photograph: Ania Dabrowska, Mind Over Matter project.
Source: Parry, B. and Dabrowska, A., Mind Over Matter: Memory, Forgetting, Brain Donation and the Search for Cures for Dementia. Practice and Theory: London. 2011
Registers of Bioinformation
Although, as we note, bioinformation can take a number of forms, this is not to say that the material instantiation that bioinformation takes is not important. In fact, the register in which bioinformation exists at any given moment plays an absolutely critical role, as we shall see, in determining who can access it, use it, circulate it, own it or capitalize on it. To understand why this is so, it is useful to begin by exploring how the different forms that bioinformation take can shape our relationships to it. Blocks of human tissue and the pathology slides that we just discussed contain valuable bioinformation, but they also remain, in the eyes of many, identifiable ‘body parts’ that are endowed with all the spiritual and emotional significance associated with human remains. Others may, however, view the tissue differently, and this can dramatically alter their approach to its collection and use. In the early 2000s in Britain, a national scandal arose when the parents of children who had died at two of the country’s leading hospitals, Alder Hey and Bristol, discovered that samples of their children’s tissue – including whole organs – had been stored in the hospital sites for many years without their permission. Some parents had initially given consent for the material to be examined to establish cause of death, but they were outraged to learn that it had subsequently been retained for future research purposes.11
The children’s tissue had clearly come to exist in two registers simultaneously: to the parents, it remained a precious fragment of a beloved family member whom they wished to inter with full funeral rites; to medical researchers, it constituted a rich source of diagnostic bioinformation that they could treat, more dispassionately, as a purely scientific resource. Consent issues aside, both are legitimate conceptions, although it is clear that they cannot easily be accommodated by both parties. Personalized bioinformation – that is, information that can be linked to an individual or group of individuals – is also an unusual resource for another reason. It is of interest not only to the individual from whom it is drawn, but also to that individual’s kin, especially those to whom they are biologically related. This is because bioinformation can be very revelatory: it can indicate potential predisposition to genetic disease and it can be used to certify or dispute biological relatedness or substantiate or disprove racial identity; all matters that can have a direct and profound impact on the lives of the source individual and their relatives. Who, then, should be considered to be ‘the owner’ of this sensitive bioinformation?
The value of bioinformation stems, in part, from its ability to provide important explanations for why diseases progress as they do, and how genetics shape individuals’ interactions with their environment. Enormous moral complexities thus arise when an individual refuses to share bioinformation derived from genetic tests with family members who might also be so affected. Respect for confidentiality is a firmly established tradition in medical practice, and patient–physician trust is often built on the assumption that confidentiality will be maintained at all costs. However, as bioethicists Mike Parker and Anneke Lucassen suggest, treating bioinformation as a ‘personal bank account’ that only one individual is able to access or control can be highly problematic, particularly if that information has the potential to shape the life experiences and chances of that person’s relatives in significant ways.12 Parker and Lucassen argue that it would be more appropriate to proceed on the assumption that genetic bioinformation is a familial resource that must be held in a ‘joint account’ for all relations to access equally. On this reading, bioinformation, although drawn from an individual, ought to be understood as something more akin to a communal or collective resource: one that should not, therefore, be subject to autonomous decision-making.
Taking this as a starting point, our intention here is to elucidate, using an interdisciplinary approach informed by science and technology studies, how bioinformation is abstracted from its subjects (its messy corporeal existence) and rendered as notated sequences, photographic images, x-rays, slides, or written or digitalized clinical, criminal or credit records – in short, as highly accessible, readable and manipulable distillations of bioinformation (data and aggregated big datasets) that now have tremendous commercial and economic value. In fact, as Watson suggests, drawing a direct line of connection with earlier, historical resource economies, bioinformation has become, in the twenty-first century, as valuable as oil: ‘a natural resource spewing forth from each of us as we live digitally – quantifiable and monetisable’.13 In tracing how this vital new resource travels, we explore what happens as it becomes ‘footloose’ and begins to circulate as a fully realized commodity that can be up-and-down-loaded, shared on peer-to-peer platforms, and circulated globally to an audience of scientific and medical consumers 24/7.
Political Economies of Bioinformation
One of the remarkable features of contemporary capitalism, as several commentators have noted, has been its interest in the project of realizing commercial value from the exploitation of ‘life itself’, as sociologist Nikolas Rose puts it.14 The capitalist economy has historically sought to capture the surplus labour power of individuals, but new ventures now seek to extract value from commercializing access to biological products and processes themselves. The emergence of these new industries and their associated markets has been driven in part by the pharmaceutical industry’s efforts to generate products to meet a range of conditions, including those caused by genetics, of which we are now much more aware. Other equally lucrative markets have been created, as anthropologist Kaushik Sunder Rajan and sociologist Melinda Cooper suggest, by speculating on new innovations that could potentially address future health risks via projects such as personalized medicine, even if such ventures may later prove to be based largely on ‘the magic of being able to pull rabbits out of hats’.15
The resources on which these new bioeconomies draw include tissues, cells and parts of the body, with the latter conceived of, as sociologist Thomas Lemke puts it, ‘as an informational network rather than a physical substrate or an anatomical machine’.16 Many of these materials first enter this economy as gifts that are donated by individuals for the purposes of medical research. However, they do not remain in this particular material form or retain their uncomplicated gift status for long. As Catherine Waldby and Robert Mitchell’s seminal work on bioinformational economies reminds us, the engineering of tissues after donation means that they are able to be put to a variety of uses and consequently adopt multiple trajectories: ‘[D]onated tissues are not simply transferred intact from one person to another, but rather diverted through laboratory processes where they may be fractionated, cloned, immortalized and multiplied in various ways [therefore] tissue sourced from one person may be distributed in altered forms along complex pathways to multiple recipients.’17
Neither can these new renderings of tissue, such as cell lines, DNA sequences or forensic, genetic or medical databases, be viewed, as the body part might be, as something that simply ‘belongs’ to an individual or family. This is because they are now, simultaneously, technical inventions. Enabling what was once biologically embedded and inaccessible bioinformation to exist in the world in more manageable, readable and mobile forms is a task that requires considerable investments of skill, expertise and creativity (what is known as intellectual labour) on the part of scientists, researchers and technicians. They are effectively designing new technological ‘products’, and, like other product designers, they wish to have their work acknowledged and to be allowed to capitalize on their inventions. One way of achieving this is for scientists (and the organizations or companies they work for) to claim these bioinformatic inventions in the courts as their ‘owned’ intellectual property that others must pay to access.18 What began as a gift has segued slowly but progressively into the condition of becoming a commodity that can be bought and sold for profit. It is through this paradoxical chain of events that bioinformation has come to inhabit two identities simultaneously: the first as highly personal and private data, the other as corporately owned property.
Negotiating the dynamics of this dual identity has given rise to some deeply problematic and, as yet, still largely unresolved questions. Who should have the right to control how bioinformation is used? If the scientist or bioinformatic specialist has ‘made’ the artefact (e.g., the cell line, DNA sequence or database) and successfully applied for a patent on her invention, shouldn’t she have the exclusive right to determine how it is used and to charge royalties for its use? But what of the unique individual from whom that information was first derived and his extended family members who share the same genetic material? Should they have the right to prohibit such uses? Or alternatively, to share in the financial rewards that arise from uses they do approve? Should rights to bioinformation be intergenerational? Should it be possible, for example, for an individual to determine how his mother’s genetic information is used and by whom, even after her death?
High-profile cases such as that of Henrietta Lachs and John Moore (discussed in Chapter 3) first focused global attention on these key questions in the 1980s, but, despite the passage of time, they remain, to this day, largely unresolved. One of the key aims of this book is to generate a coherent account of how this vital new resource is being commoditized and to examine the political, social and economic implications of the global expansion of a largely unregulated trade in bioinformation. This task becomes more urgent as the number and types of consumers of bioinformation continue to proliferate, and as the quantity of bioinformation that we are generating and trading begins to grow, exponentially. Information, as many social theorists have noted, is a very unusual resource in that
