Genetics and Society – serie

Psychiatric genetics has become ‘Big Biology’. This may come as a surprising development to those familiar with its controversial history. From eugenic origins and contentious twin studies to a global network of laboratories employing high-throughput genetic and genomic technologies, biological research on psychiatric disorders has become an international, multidisciplinary assemblage of massive data resources. How did psychiatric genetics achieve this scale? How is it socially and epistemically organized? And how do scientists experience this politics of scale? Psychiatric Genetics: From Hereditary Madness to Big Biology develops a sociological approach of exploring the origins of psychiatric genetics by tracing several distinct styles of scientific reasoning that coalesced at the beginning of the twentieth century. These styles of reasoning reveal, among other things, a range of practices that maintain an extraordinary stability in the face of radical criticism, internal tensions and scientific disappointments. The book draws on a variety of methods and materials to explore these claims. Combining genealogical analysis of historical literature, rhetorical analysis of scientific review articles, interviews with scientists, ethnographic observations of laboratory practices and international conferences, this book offers a comprehensive and detailed exploration of both local and global changes in the field of psychiatric genetics.

Stem cell research has been a problematic endeavour. For the past twenty years it has attracted moral controversies in both the public and the professional sphere. The research involves not only laboratories, clinics and people, but ethics, industries, jurisprudence, and markets. Today it contributes to the development of new therapies and affects increasingly many social arenas. The matrix approach introduced in this book offers a new understanding of this science in its relation to society. The contributions are multidisciplinary and intersectional, illustrating how agency and influence between science and society go both ways.Conceptually, this volume presents a situated and reflexive approach for philosophy and sociology of the life sciences. The practices that are part of stem cell research are dispersed, and the concepts that tie them together are tenuous; there are persistent problems with the validation of findings, and the ontology of the stem cell is elusive. The array of applications shapes a growing bioeconomy that is dependent on patient donations of tissues and embryos, consumers, and industrial support. In this volume it is argued that this research now denotes not a specific field but a flexible web of intersecting practices, discourses, and agencies. To capture significant parts of this complex reality, this book presents recent findings from researchers, who have studied in-depth aspects of this matrix of stem cell research. This volume presents state-of-the-art examinations from senior and junior scholars in disciplines from humanities and laboratory research to various social sciences, highlighting particular normative and epistemological intersections. The book will appeal to scholars as well as wider audiences interested in developments in life science and society interactions. The novel matrix approach and the accessible case studies make this an excellent resource for science and society courses.

The discovery of the two inherited susceptibility genes BRCA1 and BRCA2 in the mid-1990s created the possibility of predictive genetic testing and led to the establishment of specific medical programmes for those at high risk of developing breast cancer in the UK, US and Europe. The book provides a coherent structure for examining the diversity of practices and discourses that surround developments linked to BRCA genetics, and to the evolving field of genetics more broadly. It will be of interest to students and scholars of anthropology, sociology, history of science, STS, public health and bioethics.Chapter 8 of this book is freely available as a downloadable Open Access PDF under a Creative Commons Attribution-Non Commercial-No Derivatives 3.0 license. https://s3-us-west-2.amazonaws.com/tandfbis/rt-files/docs/Open+Access+Chapters/9780415824064_oachapter8.pdf

In the life sciences and beyond, new developments in science and technology and the creation of new social orders go hand in hand. In short, science and society are simultaneously and reciprocally coproduced and changed. Scientific research not only produces new knowledge and technological systems but also constitutes new forms of expertise and contributes to the emergence of new modes of living and new forms of exchange. These dynamic processes are tightly connected to significant redistributions of wealth and power, and they sometimes threaten and sometimes enhance democracy. Understanding these phenomena poses important intellectual and normative challenges: neither traditional social sciences nor prevailing modes of democratic governance have fully grappled with the deep and growing significance of knowledge-making in twenty-first century politics and markets.Building on new work in science and technology studies (STS), this book advances the systematic analysis of the coproduction of knowledge and power in contemporary societies. Using case studies in the new life sciences, supplemented with cases on informatics and other topics such as climate science, this book presents a theoretical framing of coproduction processes while also providing detailed empirical analyses and nuanced comparative work.Science and Democracy: Knowledge as Wealth and Power in the Biosciences and Beyond will be interesting for students of sociology, science & technology studies, history of science, genetics, political science, and public administration.

The areas of personal genomics and citizen science draw on – and bring together – different cultures of producing and managing knowledge and meaning. They also cross local and global boundaries, are subjects and objects of transformation and mobility of research practices, evaluation and multi-stakeholder groups. Thirdly, they draw on logics of ‘convergence’: new links between, and new kinds of, stakeholders, spaces, knowledge, practices, challenges and opportunities. This themed collection of essays from nationally and internationally leading scholars and commentators advances and widens current debates in Science and Technology Studies and in Science Policy concerning ‘converging technologies’ by complementing the customary focus on technical aspirations for convergence with the analysis of the practices and logics of scientific, social and cultural knowledge production that constitute contemporary technoscience. In case studies from across the globe, contributors discuss the ways in which science and social order are linked in areas such as direct-to consumer genetic testing and do-it-yourself biotechnologies.Organised into thematic sections, ‘Knowing New Biotechnologies’ explores: • ways of understanding the dynamics and logics of convergences in emergent biotechnologies • governance and regulatory issues around technoscientific convergences • democratic aspects of converging technologies – lay involvement in scientific research and the co-production of biotechnology and social and cultural knowledge.

Delays in approving genetically modified crops and foods in the European Union have led to a high profile trade conflict with the United States. This book analyses the EU-US conflict and uses it as a case study to explore the governance of new technologies.The transatlantic conflict over GM crops and food has been widely attributed to regulatory differences that divide the EU and the US. Going beyond common stereotypes of these differences and their origins, this book analyses the conflict through contending coalitions of policy actors operating across the Atlantic. Governing the Transatlantic Conflict over Agricultural Biotechnology focuses on interactions between the EU and the US, rather than on EU-US comparisons. Drawing on original research and interviews with key policy actors, the book shows how EU-US efforts to harmonise regulations for agricultural biotechnology created the context in which activists could generate a backlash against the technology. In this new context regulations were shaped along different lines. Joseph Murphy and Les Levidow provide new insights by elaborating critical perspectives on global governance, issue-framing, standard-setting and regulatory science. This accessible book will appeal to undergraduate and post-graduate students, academics and policy-makers working on a wide range of issues covered by political science, policy studies, international relations, economics, geography, business management, environmental and development studies, science and technology studies.

This groundbreaking book is the first comparative analysis of the relative strengths of global bioregions. Growth Cultures investigates the rapidly growing phenomena of biotechnology and sets this study within a knowledge economy context. Philip Cooke proposes a new knowledge-focused theoretical framework, ‘the New Global Bioeconomy’, against which to test empirical characteristics of biotechnology. In this timely volume, Cooke unifies concepts from the sociology of science, economic sociology and evolutionary economic geography to focus on the problems and prospects for policy agencies worldwide trying to build ‘biotechnology clusters’. He develops a superior policy approach of thinking in terms of platforms that integrate proximities and pipelines, which will be of significant interest for the scientific and technological communities as well as economic development policy communities. Growth Cultures will make fascinating reading for students, policy makers and researchers across management and business studies, innovation and knowledge studies, sociology, science and technology policy, applied economics, development studies and regional science.

This book tells the story of an unprecedented experiment in public participation: the government-sponsored debate on the possible commercialization of ‘GM’ crops in the UK. Giving a unique and systematic account of the debate process, this revealing volume sets it within its political and intellectual contexts, and examines the practical implications for future public engagement initiatives.The authors, an experienced team of researchers, produce a conceptually-informed and empirically-based evaluation of the debate, drawing upon detailed observation of both public and behind-the-scenes aspects of the process, the views of participants in debate events, a major MORI-administered survey of public views, and details of media coverage. With innovative methodological work on the evaluation of public engagement and deliberative processes, the authors analyze the design, implementation and effectiveness of the debate process, and provide a critique of its official findings. The book will undoubtedly be of interest to a wide readership, and will be an invaluable resource for researchers, policy-makers and students concerned with cross-disciplinary aspects of risk, decision-making, public engagement, and governance of technology.

New genetic technologies cut across a range of public regulatory domains and private lifeworlds, often appearing to generate an institutional void in response to the complex challenges they pose. As a result, a number of new social formations are being developed to legitimate public engagement and avoid the perceived democratic deficit that may result. Papers in this volume discuss a variety of these manifestations in a global context, including: genetic data bankscommittees of inquirynon-governmental organisations (NGOs)national research laboratories. These institutions, across both health and agriculture, are explored in such diverse locations as Amazonia, China, Finland, Israel, the UK and the USA. This volume exhibits a clear thematic coherence around the impact of the new genetics and their associated technologies on new social formations, and the case studies included have a significant international focus, showing a balance between theoretical and empirical approaches in this rapidly changing field.This innovative new volume will be of interest to postgraduates and professionals in the fields of sociology, social anthropology, science and technology studies, and environmental studies.

What implications are applications of new genetic technologies in biomedicine having on social identity in today’s society? New Genetics, New Identities, a wide-ranging multi-disciplinary volume in the CESAGen Genetics & Society Book series, presents not only theoretical reflection but also empirical case studies drawn from an international array of authors. Including the highly controversial areas of reproductive technologies and use of human embryos in biomedical research, other key features include: a fresh analysis of a wide-range of social and political concerns in the development of new social identitiesexaminations of the social implications of identity formation as a result from advances in genetic technologies from a number of perspectives both locally and globallyresources of a wide range of social science disciplines to discuss significant sociological, anthropological, political and ethical issues.This superb collection is an essential informative read for postgraduates and academics in the fields of sociology, anthropology and scientific technologies giving a comparative approach to complex issues surrounding the social implications of these advances in a period of rapid social change.

One of the first studies of an exciting new development in global biotechnology, this cutting edge text examines the extent of the transnational movements of tissues, stem cells, and expertise, in the developing governance framework of India. Documenting the impact of local and global governance frames on the everyday conduct of research, this groundbreaking book traces the journey of ‘spare’ human embryos in IVF clinics to public and private laboratories engaged in isolating stem cells for potential therapeutic application. The discussion also examines the gender dimension as a potential site for exploitation in the sourcing of embryonic and other biogenic materials, and suggests that a moral economy has developed in which the ethical values of the global 'North' support and encourage the donation of abundant and ethically ‘neutral’ embryos by the 'South'.This unique exploration is grounded in an empirical, multi-sited ethnographic study that takes a thoroughly comparative analysis of the ethical, religious and social issues in Europe, the United States, and organ donations already prevalent in India. In this theoretically-sensitive analysis, the authors use the resources of social anthropology and the social sciences in an innovative text which will appeal to postgraduates and professionals in the areas of STS studies, genetics, bioethics, and anthropology.

This book examines the making of human cloning as an imaginary practice and scientific fact. It explores the controversies surrounding both ‘therapeutic cloning’ for stem cell research and ‘reproductive’ cloning. The authors analyse the cultural production of cloning, how practices and representations play out in the global arena, and its transformation from science fiction to science practice. Case studies are used to illustrate key fore grounded issues: the image of the scientist, scientific expertise and institutionsthe governance of sciencethe representation of women’s bodies as the subjects and objects of biotechnology the constitution of publics, both as objects of media debate, and as their intended audience. Drawing together the Sociology of Scientific Knowledge, with insights from media and cultural studies, this book offers a timely contribution to debates about the public communication of science and the status of scientific truth. This book will be a valuable companion to students on undergraduate courses in media studies, science communication, cultural studies, science and technology studies and sociology.

Debating Human Genetics is based on ethnographic research focusing primarily on the UK publics who are debating and engaging with human genetics, and related bio and techno-science. Drawing on recent interviews and data, collated in a range of public settings, it provides a unique overview of multiple publics as they ‘frame’ the stake of the debates in this emerging, complex and controversial arena.The book outlines key sites and applications of human genetics that have sparked public interest, such as biobanks, stem cells, genetic screening and genomics. It also addresses the ‘scientific contoversies’ that have made considerable impact in the public sphere – the UK police DNA database, gene patenting, ‘saviour siblings’, and human cloning. By grounding the concepts and issues of human genetics in the real life narratives and actions of patient groups, genetic watchdogs, scientists, policy makers, and many other public groups, the book exemplifies how human genetics is a site where public knowledge and value claims converge and collide, and identifies the emergence of ‘hybrid publics’ who are engaging with this hybrid science.

Debating Human Genetics is based on ethnographic research focusing primarily on the UK publics who are debating and engaging with human genetics, and related bio and techno-science. Drawing on recent interviews and data, collated in a range of public settings, it provides a unique overview of multiple publics as they ‘frame’ the stake of the debates in this emerging, complex and controversial arena.The book outlines key sites and applications of human genetics that have sparked public interest, such as biobanks, stem cells, genetic screening and genomics. It also addresses the ‘scientific contoversies’ that have made considerable impact in the public sphere – the UK police DNA database, gene patenting, ‘saviour siblings’, and human cloning. By grounding the concepts and issues of human genetics in the real life narratives and actions of patient groups, genetic watchdogs, scientists, policy makers, and many other public groups, the book exemplifies how human genetics is a site where public knowledge and value claims converge and collide, and identifies the emergence of ‘hybrid publics’ who are engaging with this hybrid science.

The human genome is a well known symbol of scientific and technological progress in the twenty-first century. However, concerns about the exacerbation of inequalities between the rich and the poor, the developing and the developed states, the healthy and the unhealthy are causing problems for the progress of scientific research. The international community is moving towards a human rights approach in addressing these concerns. Such an approach will be piecemeal and ineffective so long as fundamental issues about economic, social and cultural rights, the so-called second generation of human rights, are not addressed. This book argues that, in order to be able to meaningfully apply a human rights framework to the governance of the human genome, the international human rights framework should be based on a unified theory of human rights where the distinction between positive and negative rights is set aside. The book constructs a common heritage concept with the right to development at its core and explores the content of the right to development through rational human rights theory. It is argued that the notion of property rights in the human genome should be placed within the context of protecting human rights, including the right to development. The concept of common heritage of humanity, contrary to the widely held belief that it is in opposition to patenting of gene sequences, supports human rights-based conceptions of property rights. This book fills a gap in the literature on international legal governance of the human genome will provide an essential reference point for research into the right to development, development issues in bioethics, the role of international institutions in law making and research governance.

Advances in molecular genetics have led to the increasing availability of genetic testing for a variety of inherited disorders. While this new knowledge presents many obvious health benefits to prospective individuals and their families it also raises complex ethical and moral dilemmas for families as well as genetic professionals. This book explores the ways in which genetic testing generates not only probabilities of potential futures, but also enjoys new forms of social, individual and professional responsibility. Concerns about confidentiality and informed consent involving children, the assessment of competence and maturity, the ability to engage in shared decision-making through acts of disclosure and choice, are just some of the issues that are examined in detail.

Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organizations. While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multi-culturalism, abortion, stigmatization, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities, or health professionals.

Based on original ethnographic research with scientists, clinicians and families, this book examines Rett syndrome to illuminate more general issues concerning the construction and interpretation of diseases and syndromes. It derives from research with a specialist team of clinicians and scientists, and a series of families referred with a potential diagnosis of Rett syndrome, and documents the scientific, clinical, patient and family experiences over a three-year period. Although Rett syndrome itself is rare, it is one of some 2,000 such syndromes, and its genetic basis has recently been linked to the much broader Autism spectrum. From a sociological or anthropological point of view, it is also of considerable interest as a clinical entity that is undergoing transformation in the light of recent post-genomic research. Traditionally, such syndromes have been diagnosed clinically, but increasingly genetic technologies are having an impact on the diagnosis, description and classification of conditions. Rett Syndrome is thus a key exemplar of the implications of genetic medicine that are far-reaching and extend well beyond this particular syndrome.

Ashkenazi Jews have the highest known population risk of carrying specific mutations in the high-risk breast cancer genes, BRCA1 and BRCA2. So what does it mean to be told you have an increased risk of genetic breast cancer because you are of Ashkenazi Jewish origin? In a time of ever-increasing knowledge about variations in genetic disease risk among different populations, there is a pressing need for research regarding the implications of such information for members of high-risk populations. Risky Genes provides first-hand intimate descriptions of women’s experiences of being Jewish and of being at increased risk of genetic breast cancer. It explores the impact this knowledge has on their identity and understanding of belonging to a collective. Using qualitative data from high-risk Ashkenazi women in the UK, this book elucidates the importance of biological discourses in forging Jewish self-identity and reveals the complex ways in which biological and social understandings of Jewish belonging intersect. In Risky Genes, Jessica Mozersky reflects upon and offers new insight into the ongoing debates regarding the implications of genetic research for populations, and of new genetic knowledge for individual and collective identity. The book will be of interest to students and scholars of sociology, anthropology, Jewish studies, medical genetics, medical ethics, religious studies, and race and ethnic studies.

A PDF version of this book is available for free in Open Access at www.tandfebooks.com. It has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 3.0 license.The sequencing of the entire human genome has opened up unprecedented possibilities for healthcare, but also ethical and social dilemmas about how these can be achieved, particularly in developing countries. UNESCO’s Bioethics Programme was established to address such issues in 1993. Since then, it has adopted three declarations on human genetics and bioethics (1997, 2003 and 2005), set up numerous training programmes around the world and debated the need for an international convention on human reproductive cloning. Negotiating Bioethics presents Langlois' research on the negotiation and implementation of the three declarations and the human cloning debate, based on fieldwork carried out in Kenya, South Africa, France and the UK, among policy-makers, geneticists, ethicists, civil society representatives and industry professionals. The book examines whether the UNESCO Bioethics Programme is an effective forum for (a) decision-making on bioethics issues and (b) ensuring ethical practice. Considering two different aspects of the UNESCO Bioethics Programme – deliberation and implementation – at international and national levels, Langlois explores: how relations between developed and developing countries can be made more equalwho should be involved in global level decision-making and how this should proceedhow overlap between initiatives can be avoidedwhat can be done to improve the implementation of international norms by sovereign stateshow far universal norms can be contextualizedwhat impact the efficacy of national level governance has at international level

Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organizations. While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multi-culturalism, abortion, stigmatization, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities, or health professionals.

One of the first studies of an exciting new development in global biotechnology, this cutting edge text examines the extent of the transnational movements of tissues, stem cells, and expertise, in the developing governance framework of India. Documenting the impact of local and global governance frames on the everyday conduct of research, this groundbreaking book traces the journey of ‘spare’ human embryos in IVF clinics to public and private laboratories engaged in isolating stem cells for potential therapeutic application. The discussion also examines the gender dimension as a potential site for exploitation in the sourcing of embryonic and other biogenic materials, and suggests that a moral economy has developed in which the ethical values of the global 'North' support and encourage the donation of abundant and ethically ‘neutral’ embryos by the 'South'.This unique exploration is grounded in an empirical, multi-sited ethnographic study that takes a thoroughly comparative analysis of the ethical, religious and social issues in Europe, the United States, and organ donations already prevalent in India. In this theoretically-sensitive analysis, the authors use the resources of social anthropology and the social sciences in an innovative text which will appeal to postgraduates and professionals in the areas of STS studies, genetics, bioethics, and anthropology.

The human genome is a well known symbol of scientific and technological progress in the 21st century. However, concerns about the exacerbation of inequalities between the rich and the poor, the developing and the developed states, the healthy and the unhealthy are causing problems for the progress of scientific research. The international community is moving towards a human rights approach in addressing these concerns. Such an approach will be piecemeal and ineffective so long as fundamental issues about economic, social and cultural rights, the so-called second generation of human rights, are not addressed. This book argues that, in order to be able to meaningfully apply a human rights framework to the governance of the human genome, the international human rights framework should be based on a unified theory of human rights where the distinction between positive and negative rights is set aside. The book constructs a common heritage concept with the right to development at its core and explores the content of the right to development through rational human rights theory. It is argued that the notion of property rights in the human genome should be placed within the context of protecting human rights, including the right to development. The concept of common heritage of humanity, contrary to the widely held belief that it is in opposition to patenting of gene sequences, supports human rights-based conceptions of property rights. This book fills a gap in the literature on international legal governance of the human genome will provide an essential reference point for research into the right to development, development issues in bioethics, the role of international institutions in law making and research governance.

This book tells the story of an unprecedented experiment in public participation: the government-sponsored debate on the possible commercialization of ‘GM’ crops in the UK. Giving a unique and systematic account of the debate process, this revealing volume sets it within its political and intellectual contexts, and examines the practical implications for future public engagement initiatives.The authors, an experienced team of researchers, produce a conceptually-informed and empirically-based evaluation of the debate, drawing upon detailed observation of both public and behind-the-scenes aspects of the process, the views of participants in debate events, a major MORI-administered survey of public views, and details of media coverage. With innovative methodological work on the evaluation of public engagement and deliberative processes, the authors analyze the design, implementation and effectiveness of the debate process, and provide a critique of its official findings. The book will undoubtedly be of interest to a wide readership, and will be an invaluable resource for researchers, policy-makers and students concerned with cross-disciplinary aspects of risk, decision-making, public engagement, and governance of technology.

DNA Barcoding has been promoted since 2003 as a new, fast, digital genomics-based means of identifying natural species based on the idea that a small standard fragment of any organism’s genome (a so-called ‘micro-genome’) can faithfully identify and help to classify every species on the planet. The fear that species are becoming extinct before they have ever been known fuels barcoders, and the speed, scope, economy and ‘user-friendliness’ claimed for DNA barcoding, as part of the larger ferment around the ‘genomics revolution’, has also encouraged promises that it could inspire humanity to reverse its biodiversity-destructive habits.This book is based on six years of ethnographic research on changing practices in the identification and classification of natural species. Informed both by Science and Technology Studies (STS) and the anthropology of science, the authors analyse DNA barcoding in the context of a sense of crisis – concerning global biodiversity loss, but also the felt inadequacy of taxonomic science to address such loss. The authors chart the specific changes that this innovation is propelling in the collecting, organizing, analyzing, and archiving of biological specimens and biodiversity data. As they do so they highlight the many questions, ambiguities and contradictions that accompany the quest to create a genomics-based environmental technoscience dedicated to biodiversity protection. They ask what it might mean to recognise ambiguity, contradiction, and excess more publicly as a constitutive part of this and other genomic technosciences.Barcoding Nature will be of interest to students and scholars of sociology of science, science and technology studies, politics of the environment, genomics and post-genomics, philosophy and history of biology, and the anthropology of science.

Prenatal screening for genetic disorders is becoming an increasingly widespread phenomenon across the globe. While studies have highlighted the importance of women’s experiences of such screening, little is known about men’s roles and direct involvement in this process. With a focus on the experiences of both women and men, this text offers an innovative and passionate account of the gendered nature of prenatal screening.Drawing on interview data with pregnant women and their male partners in a UK city, Reed provides a compelling analysis of maternal and paternal roles in prenatal screening. Through this analysis, the book raises important issues around genetics, gender and screening practice. With a focus on the gendered production of ‘good’ and ‘bad’ genes, the book explores differences between visual technologies and blood screening. It also explores the gendered nature of genetic responsibility and the impact this has on parenting roles.Extending its arguments into other key debates in prenatal genetics – including a focus on the impact of screening on other types of stratification, including ethnicity and class – Reed provides an original and comprehensive analysis of some of the most pressing concerns in the field to date. This book will be of interest to students and scholars of the sociology of health and illness, science and technology studies, gender studies, feminist bioethics and medical anthropology, as well as professionals in the fields of midwifery and genetic counselling.

As world populations continue to age, the incidence of very common, ultimately fatal neurodegenerative diseases (some of medicine’s most puzzling illnesses) will increase exponentially. Neurogenetic Diagnoses, the Power of Hope, and the Limits of Today’s Medicine explores the diverse impacts and intense meanings of genetic diagnoses for patients suffering from such diseases, and for their family caregivers and clinicians. Through richly-textured, often heart-wrenching longitudinal case studies, Neurogenetic Diagnoses... reveals how extremely difficult it can be for patients to obtain a definitive diagnosis for the cause of their symptoms, even with genetic testing; how, with or without definitive diagnoses, patients and family caregivers strive to come to terms with their situations; and how they are aided (or not) in these endeavors by their doctors. The analysis is framed by increasingly sharp social debate over the consequences of decoding the human genome -- and the impact of genetic technology on our lives.

As world populations continue to age, the incidence of very common, ultimately fatal neurodegenerative diseases (some of medicine’s most puzzling illnesses) will increase exponentially. Neurogenetic Diagnoses, the Power of Hope, and the Limits of Today’s Medicine explores the diverse impacts and intense meanings of genetic diagnoses for patients suffering from such diseases, and for their family caregivers and clinicians. Through richly-textured, often heart-wrenching longitudinal case studies, Neurogenetic Diagnoses... reveals how extremely difficult it can be for patients to obtain a definitive diagnosis for the cause of their symptoms, even with genetic testing; how, with or without definitive diagnoses, patients and family caregivers strive to come to terms with their situations; and how they are aided (or not) in these endeavors by their doctors. The analysis is framed by increasingly sharp social debate over the consequences of decoding the human genome -- and the impact of genetic technology on our lives.

Europe was told that it had no choice but to accept agbiotech, yet this imperative was turned into a test of democratic accountability for societal choices. Since the late 1990s, European public controversy has kept the agri-biotech industry and its promoters on the defensive. As some opponents and regulators alike have declared, ‘GM food/crops are on trial’. Suspicion of their guilt has been evoked by moral symbols, as disputes over whether genetically-modified products are modest benign improvements on traditional plant breeding, or dangerous Frankenfoods; and in disputes over whether they are global saviours, or control agents of multinational companies. This book examines European institutions being ‘put on trial’ for how their regulatory procedures evaluate and regulate GM products, in ways which opened up alternative futures. Levidow and Carr highlight how public controversy created a legitimacy crisis, leading to national policy changes and demands, in turn stimulating changes in EU agbiotech regulations as a strategy to regain legitimacy.