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An anthropological study based on ethnographic work in Israel and Qatar explores the relationship between science, particularly genetics, and national identity. Based on ethnographic work in Israel and Qatar, two small Middle Eastern ethnonations with significant biomedical resources, Genomic Citizenship explores the relationship between science and identity. Ian McGonigle, originally trained as a biochemist, draws on anthropological theory, STS, intellectual history, critical theory, Middle Eastern studies, cultural studies, and critical legal studies. He connects biomedical research on ethnic populations to the political, economic, legal, and historical context of the state; to global trends in genetic medicine; and to the politics of identity in the context of global biomedical research. Genomic Citizenship is more an anthropology of scientific objects than an anthropology of scientists or an ethnography of the laboratory. McGonigle bases his untraditional project on traditional anthropological methods, including participant observation. Some of the most persuasive data in the book are from public records, legal and historical sources, published scientific papers, institutional reports, websites, and brochures. McGonigle discusses biological understandings of Jewishness, especially in relation to the intellectual history of Zionism and Jewish political thought, and considers the possibility of a novel application of genetics in assigning Israeli citizenship. He also describes developments in genetic medicine in Qatar and analyzes the Qatari Biobank in the context of Qatari nationalism and state-building projects. Considering possible consequences of findings on the diverse origins of the Qatari population for tribal identities, he argues that the nation cannot be defined as either a purely natural or biological entity. Rather, it is reified, reinscribed, and refracted through genomic research and discourse.
An anthropological study based on ethnographic work in Israel and Qatar explores the relationship between science, particularly genetics, and national identity. Based on ethnographic work in Israel and Qatar, two small Middle Eastern ethnonations with significant biomedical resources, Genomic Citizenship explores the relationship between science and identity. Ian McGonigle, originally trained as a biochemist, draws on anthropological theory, STS, intellectual history, critical theory, Middle Eastern studies, cultural studies, and critical legal studies. He connects biomedical research on ethnic populations to the political, economic, legal, and historical context of the state; to global trends in genetic medicine; and to the politics of identity in the context of global biomedical research. Genomic Citizenship is more an anthropology of scientific objects than an anthropology of scientists or an ethnography of the laboratory. McGonigle bases his untraditional project on traditional anthropological methods, including participant observation. Some of the most persuasive data in the book are from public records, legal and historical sources, published scientific papers, institutional reports, websites, and brochures. McGonigle discusses biological understandings of Jewishness, especially in relation to the intellectual history of Zionism and Jewish political thought, and considers the possibility of a novel application of genetics in assigning Israeli citizenship. He also describes developments in genetic medicine in Qatar and analyzes the Qatari Biobank in the context of Qatari nationalism and state-building projects. Considering possible consequences of findings on the diverse origins of the Qatari population for tribal identities, he argues that the nation cannot be defined as either a purely natural or biological entity. Rather, it is reified, reinscribed, and refracted through genomic research and discourse.
DIVExplores the mutually constructive relationship between increasing scientific knowledge of human genetics and cultural identity through a case study of the development and reception of genomics in the Netherlands./div
Secondary Findings in Genomic Research offers a single, highly accessible resource on interpreting, managing and disclosing secondary findings in genomic research. With chapters written by experts in the field, this book is the first to concisely explain the ethical and practical issues raised by secondary genomics findings for a multi and interdisciplinary audience of genomic researchers, translational scientists, clinicians, medical students, genetic counselors, ethicists, legal experts and law students, public policy specialists and regulators. Contributors from Europe, North America, and Asia effectively synthesize perspectives from a spectrum of different scientific, societal, and global contexts, and offer pragmatic approaches to a range of topics, including oversight, governance and policy surrounding secondary genomic results, criteria for identifying results for return, communication and consent, stakeholders' attitudes and perspectives, disclosing results, and clinical, patient-centered protocols. - Thoroughly addresses the scientific, ethical, practical and clinical issues raised by secondary findings resulting from genomic research, including active debate and challenges in the field - Provides researchers, clinicians, regulators, and stakeholders with a holistic, interdisciplinary approach to interpreting, managing and disclosing secondary findings - Brings together expert analysis from scholars across Europe, North America, and Asia representing a wide variety of scientific and societal contexts
A groundbreaking analysis of how the genomic revolution is transforming American society and creating new social divisions-some along racial lines-that promise to fundamentally shape American politics for years to come. The emergence of genomic science in the last quarter century has revolutionized medicine, the justice system, and our very understanding of who we are. We use genomics to determine guilt and exonerate the convicted; devise new medicines; test embryos; and discover our ethnic and national roots. One might think that, given these advances, most would favor the availability of genomic tools. Yet as Jennifer Hochschild explains in More Science, Less Fear?, the uses of genomic science are both politically charged and hotly contested. The political divisions around genomics do not follow the usual left-right ideological divides that dominate most of American politics. Through four controversial innovations resulting from genomic science--genetically modified medicines that target African-Americans, who are demographically more susceptible to heart disease; the use of DNA evidence in the criminal justice system; the current ancestry craze; and the use of genetic tests in prenatal exams--Hochschild reveals how the phenomenon is polarizing America in novel ways. Advocates of genomic science argue that these applications will make life better, but their opponents respond by pointing out the potential for misuse--from racial profiling to "selecting out" fetuses that gene tests show to have conditions like Down's Syndrome. Hochschild's central message is that the divide hinges on answers to two questions: How significant are genetic factors in explaining human traits and behaviors? And what is the right balance between risk acceptance and risk avoidance for a society grappling with innovations arising from genomic science? A deeply researched and original analysis of the politics surrounding one of the signal issues of our times, this is essential reading for anyone interested in how the genetics revolution is reshaping society.
How global biotechnology is redefining "life itself." In the age of global biotechnology, DNA can exist as biological material in a test tube, as a sequence in a computer database, and as economically valuable information in a patent. In The Global Genome, Eugene Thacker asks us to consider the relationship of these three entities and argues that—by their existence and their interrelationships—they are fundamentally redefining the notion of biological life itself. Biological science and the biotech industry are increasingly organized at a global level, in large part because of the use of the Internet in exchanging biological data. International genome sequencing efforts, genomic databases, the development of World Intellectual Property policies, and the "borderless" business of biotech are all evidence of the global intersections of biology and informatics—of genetic codes and computer codes. Thacker points out the internal tension in the very concept of biotechnology: the products are more "tech" than "bio," but the technology itself is fully biological, composed of the biomaterial labor of genes, proteins, cells, and tissues. Is biotechnology a technology at all, he asks, or is it a notion of "life itself" that is inseparable from its use in the biotech industry? The three sections of the book cover the three primary activities of biotechnology today: the encoding of biological materials into digital form—as in bioinformatics and genomics; its recoding in various ways—including the "biocolonialism" of mapping genetically isolated ethnic populations and the newly pervasive concern over "biological security"; and its decoding back into biological materiality—as in tissue engineering and regenerative medicine. Thacker moves easily from science to philosophy to political economics, enlivening his account with ideas from such thinkers as Georges Bataille, Georges Canguilhem, Michel Foucault, Antonio Negri, and Paul Virilio. The "global genome," says Thacker, makes it impossible to consider biotechnology without the context of globalism.
Is there a gene for autism? Despite a billion-dollar, twenty-year effort to find out—and the more elusive the answer, the greater the search seems to become—no single autism gene has been identified. In Multiple Autisms, Jennifer S. Singh sets out to discover how autism emerged as a genetic disorder and how this affects those who study autism and those who live with it. This is the first sustained analysis of the practices, politics, and meaning of autism genetics from a scientific, cultural, and social perspective. In 2004, when Singh began her research, the prevalence of autism was reported as 1 in 150 children. Ten years later, the number had jumped to 1 in 100, with the disorder five times more common in boys than in girls. Meanwhile the diagnosis changed to “autistic spectrum disorders,” and investigations began to focus more on genomics than genetics, less on single genes than on hundreds of interacting genes. Multiple Autisms charts this shift and its consequences through nine years of ethnographic observations, analysis of scientific and related literatures, and morethan seventy interviews with autism scientists, parents of children with autism, and people on the autism spectrum. The book maps out the social history of parental activism in autism genetics, the scientific optimism about finding a gene for autism and the subsequent failure, and the cost in personal and social terms of viewing and translating autism through a genomic lens. How is genetic information useful to people living with autism? By considering this question alongside the scientific and social issues that autism research raises, Singh’s work shows us the true reach and implications of a genomic gaze.
This Encyclopedia presents a comprehensive collection of entries addressing the normative claims and definitions of the critical concepts, principles, and approaches that make up the field of citizenship studies.
Genomics and Society; Ethical, Legal-Cultural, and Socioeconomic Implications is the first book to address the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011. The work addresses fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare system. Of particular interest to healthcare practitioners, bioethicists, and health economists, and of tangential interest to the gamut of applied social scientists investigating the societal impact of new medical paradigms, the work describes a myriad of issues around consent, confidentiality, rights, patenting, regulation, and legality in the new era of genomic medicine. - Addresses the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011 - Presents the core fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare system - Describes a myriad of issues around consent, including confidentiality, rights, patenting, regulation, and more
Recent debate about the ethical and regulatory dimensions of developments in genetics has sidelined societal and cultural aspects, which arguably are indispensable for a nuanced understanding of the complexities of the topic. Regulatory and ethical debates benefit from taking seriously this ’third dimension’ of culture, which often determines the configurations and limits of the space within which scientific, ethical and legal debate can take place. To fill this gap, this volume brings together contributions exploring the mutual relationships between genetics, markets, societies and identities in genetics and genomics. It draws upon the recent transdisciplinary debate on how socio-cultural factors influence understandings of ’genetics2.0' and shows how individual and collective identities are challenged or reinforced by cultural meanings and practices of genetics. This book will become a standard reference for everyone seeking to make sense of the controversies and shifts in the field of genetics in the second decade of the twenty-first century.