While the sequencing of the human genome was a landmark achievement, the availability and manipulation of such a vast amount of data about our species has inevitably led to questions that are increasingly fundamental and urgent: now that information about human bodies can be transformed into a natural resource, how will and should we interpret and use it? With The Postgenomic Condition, Jenny Reardon draws on more than a decade of research in molecular biology labs, commercial startups, governmental agencies and civic spaces to examine the extensive efforts after the completion of the Human Genome Project to transform genomics from high tech informatics practiced by a few well-financed scientists and engineers to meaningful knowledge beneficial to all people. Through her in-depth profiles of genomic initiatives around the world, we see hopes to forge public knowledge and goods from blood and DNA meet the reality of limited resources and conflicting values.
Building the argument around the limits of liberal concepts of openness, information, inclusion, privacy, property and the public concepts that proved salient at different points in the unfolding story of efforts to make sense of human genomes Reardon shows how genomics challenges us to move beyond existing liberal frameworks to ask deeper questions of knowledge and justice. While the news media is filled with grand visions of future designer drugs and babies, The Postgenomic Condition brings richly into view these hard on-the-ground questions about what can be known and who and how we will live on a depleted but data-rich, interconnected yet fractured planet, where technoscience garners disproportionate resources.
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Jenny Reardon is professor of sociology and the founding director of the Science and Justice Research Center at the University of California, Santa Cruz.
"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 "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 "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 "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
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