Neurogenetic Diagnoses The Power Of Hope And The Limits Of Today S Medicine

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.

Disclosure is a frequently used but rarely interrogated concept in health and social welfare. Abuse, disability, sexuality and health status can be ‘disclosed’ to peers and professionals, and on some occasions, disclosure is a requirement and not a choice. This innovative collection examines the new social and political implications of disclosure practices in health and illness. We make our identities and our connections with others by sharing life stories, experiences and innermost desires and are often asked to disclose facts about our lives, bodies and minds, at times with unintended consequences. Yet how and what, why and when people ‘disclose’ – and perceive, question and expose – and in what ways, has rarely received critical analytic attention. The contributors take up these problems by foregrounding the many shades of disclosure: from the secret, through the telling of diagnosis, to the more prosaic sharing of narratives from everyday life. The processes and implications of disclosing are addressed in areas such as: illness trajectories and end-of-life decisions; ethical research practices; medical procedures; and interpersonal relationships. Exploring the idea of disclosure as a moral imperative and a social act, this book offers a diverse range of empirical case studies, social theories and methodological insights to show how dominant and normative understandings of social relationships and their obligations shape our understanding of acts of disclosure, enquiry and exposure. It will be of interest to students and academics with an interest in narrative studies, medical anthropology, bioethics, health psychology, health studies and the sociology of health and illness.

Referring to the focus of the biosciences on molecular "particles" of the human biology, such as stem cells, genes, and neurons, this account examines the relationships between culture, society, and bioscientific research. Showing that the atomized body is indeed socially and culturally embedded, in plural and complex ways, it argues that biomedicine and biotechnology do not only intersect with the human body, but also reshape our perceptions of selfhood and life. From a multidisciplinary perspective, this volume explores the biosciences and the atomized body in their social, cultural, and philosophical contexts.

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 at http://www.taylorfrancis.com under a Creative Commons Attribution-Non Commercial-No Derivatives (CC-BY-NC-ND) 3.0 license.

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.

While some theorists argue that medicine is caught in a relentless process of ‘geneticization’ and others offer a thesis of biomedicalization, there is still little research that explores how these effects are accomplished in practice. Joanna Latimer, whose groundbreaking ethnography on acute medicine gave us the social science classic The Conduct of Care, moves her focus from the bedside to the clinic in this in-depth study of genetic medicine. Against current thinking that proselytises the rise of laboratory science, Professor Latimer shows how the genetic clinic is at the heart of the revolution in the new genetics. Tracing how work on the abnormal in an embryonic genetic science, dysmorphology, is changing our thinking about the normal, The Gene, the Clinic, and the Family charts new understandings about family, procreation and choice. Far from medicine experiencing the much-proclaimed ‘death of the clinic’, this book shows how medicine is both reasserting its status as a science and revitalising its dominance over society, not only for now but for societies in the future. This book will appeal to students, scholars and professionals interested in medical sociology, science and technology studies, the anthropology of science, medical science and genetics, as well as genetic counselling.

An Anthropology of Biomedicine is an exciting new introduction to biomedicine and its global implications. Focusing on the ways in which the application of biomedical technologies bring about radical changes to societies at large, cultural anthropologist Margaret Lock and her co-author physician and medical anthropologist Vinh-Kim Nguyen develop and integrate the thesis that the human body in health and illness is the elusive product of nature and culture that refuses to be pinned down. Introduces biomedicine from an anthropological perspective, exploring the entanglement of material bodies with history, environment, culture, and politics Develops and integrates an original theory: that the human body in health and illness is not an ontological given but a moveable, malleable entity Makes extensive use of historical and contemporary ethnographic materials around the globe to illustrate the importance of this methodological approach Integrates key new research data with more classical material, covering the management of epidemics, famines, fertility and birth, by military doctors from colonial times on Uses numerous case studies to illustrate concepts such as the global commodification of human bodies and body parts, modern forms of population, and the extension of biomedical technologies into domestic and intimate domains Winner of the 2010 Prose Award for Archaeology and Anthropology