Cloth: 978-0-226-34455-3 | Paper: 978-0-226-51045-3 | Electronic: 978-0-226-34519-2
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ABOUT THIS BOOK
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.
TABLE OF CONTENTS
The Postgenomic Condition: An Introduction
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.
The Information of Life, or the Life of Information?
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?
Inclusion: Can Genomics Be Antiracist?
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.
Who Represents the Human Genome?
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.
Genomics for the People or the Rise of the Machines?
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?
Genomics for the 98 Percent?
[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.
The Genomic Open 2.0: The Public v. The Public
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.
Life on Third: Knowledge and Justice after the Genome
[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.