Author: Aviad E. Raz
Publisher: Routledge
ISBN: 1134005431
Category : Medical
Languages : en
Pages : 205
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Book Description
The social and bioethical aspects of carrier testing and its assimilation by specific groups are examined through several qualitative case studies in traditional (religious, ethnic) as well as modern (secular-consumerist) communities in Israel and the U.S. Comparing the views of community members and health professionals, the analysis offers a new look on the relations between eugenics and "genetic responsibility."
Author: Aviad E. Raz
Publisher: Routledge
ISBN: 1134005423
Category : Social Science
Languages : en
Pages : 437
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Book Description
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.
Author: Wendy R. Uhlmann
Publisher: John Wiley & Sons
ISBN: 1118210530
Category : Medical
Languages : en
Pages : 647
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Book Description
The first book devoted exclusively to the principles and practice of genetic counseling—now in a new edition First published in 1998, A Guide to Genetic Counseling quickly became a bestselling and widely recognized text, used nationally and internationally in genetic counseling training programs. Now in its eagerly anticipated Second Edition, it provides a thoroughly revised and comprehensive overview of genetic counseling, focusing on the components, theoretical framework, and unique approach to patient care that are the basis of this profession. The book defines the core competencies and covers the genetic counseling process from case initiation to completion—in addition to addressing global professional issues—with an emphasis on describing fundamental principles and practices. Chapters are written by leaders in the field of genetic counseling and are organized to facilitate academic instruction and skill attainment. They provide the most up-to-date coverage of: The history and practice of genetic counseling Family history Interviewing Case preparation and management Psychosocial counseling Patient education Risk communication and decision-making Medical genetics evaluation Understanding genetic testing Medical documentation Multicultural counseling Ethical and legal issues Student supervision Genetic counseling research Professional development Genetics education and outreach Evolving roles and expanding opportunities Case examples A Guide to Genetic Counseling, Second Edition belongs on the syllabi of all medical and human genetics and genetic counseling training programs. It is an indispensable reference for both students and healthcare professionals working with patients who have or are at risk for genetic conditions.
Author: Daniel Navon
Publisher: University of Chicago Press
ISBN: 022663809X
Category : Medical
Languages : en
Pages : 409
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Book Description
With every passing year, more and more people learn that they or their young or unborn child carries a genetic mutation. But what does this mean for the way we understand a person? Today, genetic mutations are being used to diagnose novel conditions like the XYY, Fragile X, NGLY1 mutation, and 22q11.2 Deletion syndromes, carving out rich new categories of human disease and difference. Daniel Navon calls this form of categorization “genomic designation,” and in Mobilizing Mutations he shows how mutations, and the social factors that surround them, are reshaping human classification. Drawing on a wealth of fieldwork and historical material, Navon presents a sociological account of the ways genetic mutations have been mobilized and transformed in the sixty years since it became possible to see abnormal human genomes, providing a new vista onto the myriad ways contemporary genetic testing can transform people’s lives. Taking us inside these shifting worlds of research and advocacy over the last half century, Navon reveals the ways in which knowledge about genetic mutations can redefine what it means to be ill, different, and ultimately, human.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309047986
Category : Medical
Languages : en
Pages : 353
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Book Description
Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
Author: Anna Harris
Publisher: Routledge
ISBN: 1317368177
Category : Social Science
Languages : en
Pages : 253
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Book Description
Online genetic testing services are increasingly being offered to consumers who are becoming exposed to, and knowledgeable about, new kinds of genetic technologies, as the launch of a 23andme genetic testing product in the UK testifies. Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is now capturing the attention, and imagination, of hundreds of thousands of people who can not only buy genetic tests online, but can also go online to find relatives, share their results with strangers, sign up for personal DNA-based musical scores, and take part in research. This book critically examines this market of direct-to-consumer (DTC) genetic testing from a social science perspective, asking, what happens when genetics goes online? With a focus on genetic testing for disease, the book is about the new social arrangements which emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet). It examines the intersections of new genetics and new media by drawing from three different fields: internet studies; the sociology of health; and science and technology studies. While there has been a surge of research activity concerning DTC genetic testing, particularly in sociology, ethics and law, this is the first scholarly monograph on the topic, and the first book which brings together the social study of genetics and the social study of digital technologies. This book thus not only offers a new overview of this field, but also offers a unique contribution by attending to the digital, and by drawing upon empirical examples from our own research of DTC genetic testing websites (using online methods) and in-depth interviews in the United Kingdom with people using healthcare services.
Author: Nancy L. Fisher
Publisher: JHU Press
ISBN: 9780801853463
Category : Health & Fitness
Languages : en
Pages : 280
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Book Description
"The first global attempt by several experts from diverse backgrounds to address specific ethnic and cultural beliefs and their implications for genetic services. It is long overdue!" -- Alliance Alert.
Author: Stephen Hilgartner
Publisher: Routledge
ISBN: 113674827X
Category : Social Science
Languages : en
Pages : 305
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Book Description
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.
Author: Adèle Langlois
Publisher: Routledge
ISBN: 1136237011
Category : Medical
Languages : en
Pages : 212
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Book Description
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 equal who should be involved in global level decision-making and how this should proceed how overlap between initiatives can be avoided what can be done to improve the implementation of international norms by sovereign states how far universal norms can be contextualized what impact the efficacy of national level governance has at international level Drawing on extensive empirical research, Negotiating Bioethics presents a truly global perspective on bioethics. The book will be of interest to students and scholars of sociology, politics, science and technology studies, bioethics, anthropology, international relations, and public health. 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.
Author: Claire Waterton
Publisher: Routledge
ISBN: 1351574779
Category : Social Science
Languages : en
Pages : 381
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Book Description
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.
