The Postgenomic Condition Ethics, Justice, and Knowledge after the Genome
by Jenny Reardon
University of Chicago Press, 2017
Cloth: 978-0-226-34455-3 | Paper: 978-0-226-51045-3 | Electronic: 978-0-226-34519-2
DOI: 10.7208/chicago/9780226345192.001.0001
ABOUT THIS BOOKAUTHOR BIOGRAPHYREVIEWSTABLE OF CONTENTS

ABOUT THIS BOOK

Now that we have sequenced the human genome, what does it mean? In The Postgenomic Condition, Jenny Reardon critically examines the decade after the Human Genome Project, and the fundamental questions about meaning, value and justice this landmark achievement left in its wake.

Drawing on more than a decade of research—in molecular biology labs, commercial startups, governmental agencies, and civic spaces—Reardon demonstrates how the extensive efforts to transform genomics from high tech informatics practiced by a few to meaningful knowledge beneficial to all exposed the limits of long-cherished liberal modes of knowing and governing life. Those in the American South challenged the value of being included in genomics when no hospital served their community.  Ethicists and lawyers charged with overseeing Scottish DNA and data questioned how to develop a system of ownership for these resources when their capacity to create things of value—new personalized treatments—remained largely unrealized. Molecular biologists who pioneered genomics asked whether their practices of thinking could survive the deluge of data produced by the growing power of sequencing machines. While the media is filled with grand visions of precision medicine, The Postgenomic Condition shares these actual challenges of the scientists, entrepreneurs, policy makers, bioethicists, lawyers, and patient advocates who sought to leverage liberal democratic practices to render genomic data a new source of meaning and value for interpreting and caring for life. It brings into rich empirical focus the resulting hard on-the-ground questions about how to know and live on a depleted but data-rich, interconnected yet fractured planet, where technoscience garners significant resources, but deeper questions of knowledge and justice urgently demand attention.

AUTHOR BIOGRAPHY

Jenny Reardon is professor of sociology and the founding director of the Science and Justice Research Center at the University of California, Santa Cruz.
 

REVIEWS

“The Postgenomic Condition is a beautifully tendered plea for a revived approach to ethics in genomics – one that invites wide open discussion that includes the experiences and interests of traditionally marginalized groups.”
— Sarah S. Richardson, Harvard University

"How to think —how to make common meanings, how to live thoughtfully with oneself and others, how to consider things, actual things—in a world of endless genomic information and deluges of data is the key question of this marvelous, world-travelling, story-filled book. My favorite chapter takes the reader along Third Street in San Francisco, from glitzy new precision medicine and pharma buildings to a closed reproductive clinic that served mainly black and brown women. Good intentions, democratic and liberal idioms, and vast investments in digitization, but not in people, braid together to shape the heavily capitalized, sharply unequal postgenomic condition. This is a searching, research-rich, generous book, attentive to the dreams and worries of researchers and investors as well as ordinary people. It is a book that studies unending promises with a historically informed eye, while still holding open the possibility that genomic worlds are not fixed, not finished, but still in formation, still thinkable."
— Donna Haraway, University of California at Santa Cruz

"Reardon lays out a bold vision for genomics's potential. She probes the value of the human genome from a utilitarian perspective, contending that human DNA and data constitute the raw resource of our times: a commodity whose value is to be quantified as biocapital. Thus, the postgenomic condition is about using information and knowledge as the currency from which to build a 'genomics that is of, for, and by the people'."
— Nature

“Jenny Reardon's The Postgenomic Condition draws on decades of fieldwork to tell stories that lay bare the intricate tangle of technologies, individuals, institutions, expectations, experiments, businesses, communities, acts of resistance and superhuman efforts of grinding hard work that make up our genomic age. It is an example of the best kind of sociological writing, where specific, detailed, well-told stories are built into a powerful set of arguments with implications not only for the field in question, but for wider society too. This is a book not just about what went wrong in genomics, and how hopes for a better world go awry, it is also about what happens when our democracy encounters new technologies that refuse to sit still long enough to be understood.”
— New Scientist

"Reardon is especially interested in genomics’ role in augmenting or undermining conditions for justice and democracy. The book reads like an unfolding story with a clear narrative and argumentative agenda. She cogently argues that much of genomics research, while masquerading as a vehicle for liberal democracy and justice by revealing our common humanity, fails to create the conditions needed for a more democratic and just society."
— The Hastings Report

"Across the book, Reardon insightfully explores a number of cases through which we can follow how human genomic programs are operationalized and negotiated across different stakeholders, mostly in the US and Scotland. . . . The book is excellent when Reardon discusses the moral ambition and democratic ambiguities of contemporary genomics – how novel forms of governance are inscribed into genomics institutional design. Reardon is insightful in describing how big genomic programs are imbued with moral and political aspirations—enrolling people in genomic initiatives, promoting a cosmopolitan ethic of care, making space for community consultation, favouring citizens’ control of genomic data—that often turn out to be of limited value or just illusory. She offers interesting comments on the contemporaneity of postgenomics with the rise of major players in digital capitalism such as Google, Facebook, and Amazon."
— Somatosphere

“[T]hought-provoking and intelligently argued. . . Reardon sees genomic medicine as a salvage-attempt to wrest meaning from the various human genome projects undertaken throughout the world. She takes us through the history of DNA sequencing projects as well as through the narratives spun by these genomics communities. . . . Using Hannah Arendt’s notions of active thinking and the ethics of attention, Reardon calls for a re-evaluation of who benefits from genomics. . . . [A] call to arms, beseeching biologists to ‘take back’ biology from informational biotechnology, and to study and appreciate organisms, their interactions, and their messy interpenetrations.”
— Organisms

"This book is a compelling introduction to the interplay between personal genomics, precision medicine, and social justice. Reardon defines the post-genomic condition as "the question of the uses, significance, and value of the human genome sequence.” In eight highly readable chapters, she critically assesses numerous concerns, including the relatively brief history of global genomics research with an emphasis on programs and initiatives in the US; how race is an issue in genomics research, both socially and scientifically; and whether genomics research benefits the general populace or predominantly supports researchers and the businesses that have developed to create and promote genomics-based technologies. An extensive bibliography and notes sections for each chapter offer options for further study. The text is written conversationally and with anecdotes, and although it can be a bit dense at times, the historical narrative and ethical questions are a fascinating insight into a rapidly evolving, wide-ranging scientific field with significant sociological implications. Recommended."
— Choice

TABLE OF CONTENTS


DOI: 10.7208/chicago/9780226345192.003.0001
[democracy;genomics;Arendt;Lyotard;postgenomic;liberalism;ethics;justice]
Following the completion of the Human Genome Project, genomics leaders sought to transform the human genome sequence into revolutionary biomedical knowledge. For this, they required not just better sequencing technologies, but DNA and data from millions of humans, and the ability to interpret this bioinformation. Their aspirations raised worries that impersonalized technoscientific systems of DNA collection and analysis would threaten the capacity of humans to think and act freely. In response, leaders and funders of genomics sought to craft practices that supported freedom of thought and action. Indeed, in a striking turn of events, they argued that their field would support just democratic polities. The chapter introduces these novel articulations, and the apparatus the book uses to understand them. Central to this apparatus is the postgenomic condition, a concept developed along with Jean-François Lyotard’s The Postmodern Condition and Hannah Arendt’s The Human Condition. Shaped by this theoretical construct, the book is grounded in a multi-sited ethnography of the “democratization” of genomics. The chapter explains the links between this empirical project and the book’s theoretical aspirations. It argues that efforts to constitute genomics as democratic and just—or genomic liberalism—powerfully illuminate contemporary conditions of knowledge, ethics and justice.


DOI: 10.7208/chicago/9780226345192.003.0002
[information;cybernetics;genomics;Lyotard;justice;epistemology;DNA;sequencing;democracy;atomic]
This chapter explores the powerful yet under-examined notion of information that underpinned the Human Genome Project, and the problem of meaning it created. Based in interviews with the main architects of the Human Genome Project, and primary and secondary historical research, it argues that at the heart of genomics is a cybernetic approach to information that sought not to decode its meaning, but rather to encode it in a manner that secured its accurate, efficient reproduction. To produce this information, genome scientists replaced slow error-prone human beings with automated sequencing machines designed for speed and efficiency. The chapter explores the questions of knowledge and justice created by efforts to produce new forms of human freedom and insights about life in a setting marked by the rise of these automated sequencing machines, and the venture capital needed to finance them. While the free flow of information figures as a core value in both post WWII liberal democracies and sciences, what happens to this value when information is reduced to a signal that is produced and communicated via automated machines, and whose meaning is irrelevant?


DOI: 10.7208/chicago/9780226345192.003.0003
[race;genomics;inclusion;democracy;health;African American;Tuskegee;justice]
Given the enduring legacy of slavery, and the political importance of including African Americans in the polity, it is not surprising that American efforts to build an inclusive, democratic genomics began with African Americans. This focus also aligned with population geneticists’ Out-of-Africa theory which posited that “African” genomes contain the most human genetic variation. The chapter explains the opportunities and problems these efforts to include African Americans in genomics posed. The empirical material derives from interviews and fieldwork conducted from 1999-2004 at historically-black universities and colleges (HBCUs) that sought to establish genomics programs. While these efforts promised to foster both better genomics and a more inclusive democratic polity, fieldwork on the ground revealed dilemmas: the liberal imperative to include left little room to ask under what conditions inclusion might or might not promote knowledge or justice. Yet this question of the value of inclusion arose again and again as researchers attempted to collect the DNA of African Americans in the American South who lacked adequate basic health care. While no answers emerged, the discussions revealed the central issues and tensions that would define the decade ahead, as well as the importance of foregrounding questions of justice.


DOI: 10.7208/chicago/9780226345192.003.0004
[representation;genomics;haplotype;global;governance;justice;population;race;bioethics]
Who in the world could and should properly represent variation in the human genome? American genome scientists and policy makers argued that previous global efforts to represent the variability of human genomes failed because they sought DNA from so-called “vulnerable” indigenous populations. They proposed instead to collect from majority populations, populations they believed possessed the power to represent themselves. Based on fieldwork and interviews with the main architects of the International Haplotype Map Project, the chapter brings to light the failure of this liberal democratic imaginary to respond to the on-the-ground reality that there were no clear well-bounded majority populations who could represent themselves independent of efforts to engage them. Far from addressing concerns about exclusion and discrimination, these efforts raised questions about how to constitute groups with both political standing and epistemological value. These questions of representation in turn raised questions about how to justly allocate resources in a world where genomics had opened up new narratives of truth, justice and the human condition.


DOI: 10.7208/chicago/9780226345192.003.0005
[Scotland;genomics;sovereignty;biobank;bioethics;justice;Lyotard;sequencing]
Grounded in a decade-long ethnographic study of Generation Scotland (GS), the chapter explores the challenges faced as the new Scottish government attempted to create a biobank that would serve the people of Scotland. To uphold the principle of public sovereignty, leaders originally told participants that their blood and DNA would not leave the country. Yet a few years after collection, the rapid global advance of sequencing technologies meant that the latest technologies no longer existed in Scotland. Thus, to develop the value of the biobank, Scottish DNA would have to move beyond Scottish borders. Questions ensued about whether Scotland was part of the same country as England, and thus whether its citizens’ DNA could travel there. The chapter documents Generation Scotland’s efforts to reconcile the global flows of contemporary bioinformatics with the discrete boundaries of nations and their people. It brings into focus two of the book’s central questions: rather than persons who possess information that can guide democratic decisions, are citizens instead in-formation along with the machines? If individual informed consent is not possible, how can democratic and ethical decisions be made that do not capitulate, as Lyotard predicted, to technical logics?


DOI: 10.7208/chicago/9780226345192.003.0006
[personal genomics;open source;public;private;biotechnology;bioinformatics;postgenomic;Silicon Valley;justice]
The Human Genome Project’s open-source ethos sat uneasily next to historic commitments to biomedical privacy rights. Google-backed personal genomics (PG) company 23andMe argued that citizens should possess the right to make their biological information public. State agencies disagreed, charging 23andMe with threatening privacy rights and failing to comply with important government standards that ensured the accurate transmission of information to citizens. Drawing on semi-structured interviews conducted between 2008 and 2012 with those who worked at PG companies, as well as fieldwork in Silicon Valley, the chapter argues that the ensuing debates revealed deeper contemporary struggles over how to constitute knowledge and justice in the midst of challenges to the credibility of dominant institutions. It considers what happens to liberalism’s historic commitment to the right to control—to own—one’s body when even bodily substrates enter open-source idioms. Drawing on Arendtian readings of the importance of both the private and public realm, it argues against casting one value out in favor of another, and for articulating notions of public and private that can respond to the postgenomic condition.


DOI: 10.7208/chicago/9780226345192.003.0007
[public;genomics;openness;Arendt;justice;personal;truth;bioethics;sequencing machines;biotechnology]
While the decade after the HGP began with calls to save the human genome from private enclosure, it ended with efforts to make public millions of human genomes. This chapter describes what happened when U.S. citizens volunteered to be among the first to say ‘yes’ to sharing their whole genome sequence. These citizens participated in the Personal Genome Project (PGP), a Harvard University study led by George Church that aspired to sequence and share the genomes of millions of citizens. However, unlike the HGP, the PGP did not garner widespread support. While publicly-funded scientists could argue that it was unjust for corporations to enclose the human genome, when scientists who received considerable private-funding, like Church, argued it was unjust for governments to invoke privacy rights to protect the flow of genomic information, it produced less moral clarity. PGP proponents argued that privacy was impossible to guarantee, and that it was unethical to deny this truth. However, truth proved a fraught affair, and heroic stories of the public versus the private, and science versus commerce no longer worked to secure a true and just genomics. Instead, a trusted approach to sharing biodata needed to account for these new postgenomic conditions.


DOI: 10.7208/chicago/9780226345192.003.0008
[justice;San Francisco;biotechnology;Arendt;inequality;race;Silicon Valley;bioinformatics;venture capital;postgenomic]
Over the last decade, scientists, policy makers and citizens took the first steps towards creating a genomics they hoped would be of, for and by the people. However, in each case they quickly encountered problems of justice and knowledge that made the onward route unclear. Tuskegee researchers opened the doors to including African Americans in genomic research, but ultimately did not use their samples and abandoned the effort. Generation Scotland avoided the international outrage encountered in Iceland, but only to create a biobank with unclear value for the people of Scotland and researchers. 23andMe positioned itself as a democratic maverick, but today faces a class action lawsuit. Rather than a story of progress where genomics and democracy come together to humanize and advance genomics, this concluding chapter argues that genomics is part of creating a new order that the language of democracy helps to facilitate, but fails to describe. How, as Arendt asked, can we describe and speak that which we do in this postgenomic age? The stories offered in The Postgenomic Condition provide some guidance. The book ends by describing the approaches to justice, ethics, and knowledge they open up and make available for public debate and development.