genetic testing accounts of autonomy responsibility and blame genetics and society

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Genetic Testing

Author : Michael Arribas-Ayllon
ISBN : 9781134026296
Genre : Law
File Size : 37. 44 MB
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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.

The Handbook Of Genetics Society

Author : Paul Atkinson
ISBN : 9781134128778
Genre : Science
File Size : 69. 65 MB
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An authoritative Handbook which offers a discussion of the social, political, ethical and economic consequences and implications of the new bio-sciences. The Handbook takes an interdisciplinary approach providing a synoptic overview of contemporary international social science research on genetics, genomics and the new life sciences. It brings together leading scholars with expertise across a wide-ranging spectrum of research fields related to the production, use, commercialisation and regulation of genetics knowledge. The Handbook is structured into seven cross-cutting themes in contemporary social science research on genetics with introductions written by internationally renowned section editors who take an interdisciplinary approach to offer fresh insights on recent developments and issues in often controversial fields of study. The Handbook explores local and global issues and critically approaches a wide range of public and policy questions, providing an invaluable reference source to a wide variety of researchers, academics and policy makers.

Cybergenetics

Author : Anna Harris
ISBN : 9781317368182
Genre : Social Science
File Size : 47. 46 MB
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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.

The Case Against Perfection

Author : Michael J Sandel
ISBN : 9780674043060
Genre : Philosophy
File Size : 56. 54 MB
Format : PDF
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Community Genetics And Genetic Alliances

Author : Associate Professor of Sociology Aviad E Raz
ISBN : 9781134005437
Genre : Medical
File Size : 55. 76 MB
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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.

Competing Responsibilities

Author : Susanna Trnka
ISBN : 9780822373056
Genre : Social Science
File Size : 81. 98 MB
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Noting the pervasiveness of the adoption of "responsibility" as a core ideal of neoliberal governance, the contributors to Competing Responsibilities challenge contemporary understandings and critiques of that concept in political, social, and ethical life. They reveal that neoliberalism's reification of the responsible subject masks the myriad forms of individual and collective responsibility that people engage with in their everyday lives, from accountability, self-sufficiency, and prudence to care, obligation, and culpability. The essays—which combine social theory with ethnographic research from Europe, North America, Africa, and New Zealand—address a wide range of topics, including critiques of corporate social responsibility practices; the relationships between public and private responsibilities in the context of state violence; the tension between calls on individuals and imperatives to groups to prevent the transmission of HIV; audit culture; and how health is cast as a citizenship issue. Competing Responsibilities allows for the examination of modes of responsibility that extend, challenge, or coexist with the neoliberal focus on the individual cultivation of the self. Contributors Barry D. Adam, Elizabeth Anne Davis, Filippa Lentzos, Jessica Robbins-Ruszkowski, Nikolas Rose, Rosalind Shaw, Cris Shore, Jessica M. Smith, Susanna Trnka, Catherine Trundle, Jarrett Zigon

Assessing Genetic Risks

Author : Lori B. Andrews
ISBN : NAP:13901
Genre : Medical
File Size : 89. 61 MB
Format : PDF
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This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and policy recommendations on key issues in genetic testing and screening. Among the important issues covered are quality control in genetic gesting; appropriate roles for public agencies, private health practitioners, research laboratories and centers, and companies involved in testing; value-neutral education and counseling for persons considering testing; use of test results in insurance, employment, and other settings; and more.

Autonomy Paternalism

Author : Thomas Nys
ISBN : 9042918802
Genre : Medical
File Size : 75. 30 MB
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In recent years, the triumph of autonomy has made paternalist interventions increasingly problematic. The value of a patient's right to self-determination and the practice of informed consent are considered supremely important in present-day health care ethics. In general, the idea of 'doctor knows best' has become more and more suspicious. This has left us with a situation in which paternalist medicine seems difficult to reconcile with respect for patient autonomy. This book offers a thorough reflection on the relationship between autonomy and paternalism, and argues that, from both theoretical and practical angles, the tension between these concepts is not as acute as it might seem. In long-term care, psychiatry, and care for the severely handicapped, the principle of respect for autonomy is particularly ill-suited. This, however, does not mean that such respect is totally irrelevant, but that it should take a different shape. Good care in those cases requires us to transcend the sharp dichotomy between autonomy and paternalism. In Autonomy and Paternalism: Reflections on the Theory and Practice of Health Care various acclaimed authors present their views on this interesting and extremely relevant debate.

Risks In The Making

Author : Ine van Hoyweghen
ISBN : 9789053569276
Genre : Social Science
File Size : 49. 88 MB
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In recent decades, insurance companies, scientists, and public officials have debated the potential use of genetic testing in insurance decisions. With Risks in the Making, Ine van Hoyweghen alters the terms of the debate, moving it from abstract, theoretical grounds to the question of how insurance companies actually work. Through an empirical ethnographic study of life insurance in Belgium, van Hoyweghen reveals fascinating and important details about insurance practices and risk management, underscoring the diversity of insurance markets, underwriting practices, and strategies.

The Gene

Author : Siddhartha Mukherjee
ISBN : 9781476733531
Genre : Medical
File Size : 39. 66 MB
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THE #1 NEW YORK TIMES BESTSELLER A New York Times Notable Book A Washington Post and Seattle Times Best Book of the Year From the Pulitzer Prize-winning author of The Emperor of All Maladies—a fascinating history of the gene and “a magisterial account of how human minds have laboriously, ingeniously picked apart what makes us tick” (Elle). “Dr. Siddhartha Mukherjee dazzled readers with his Pulitzer Prize-winning The Emperor of All Maladies in 2010. That achievement was evidently just a warm-up for his virtuoso performance in The Gene: An Intimate History, in which he braids science, history, and memoir into an epic with all the range and biblical thunder of Paradise Lost” (The New York Times). In this biography Mukherjee brings to life the quest to understand human heredity and its surprising influence on our lives, personalities, identities, fates, and choices. “Mukherjee expresses abstract intellectual ideas through emotional stories…[and] swaddles his medical rigor with rhapsodic tenderness, surprising vulnerability, and occasional flashes of pure poetry” (The Washington Post). Throughout, the story of Mukherjee’s own family—with its tragic and bewildering history of mental illness—reminds us of the questions that hang over our ability to translate the science of genetics from the laboratory to the real world. In riveting and dramatic prose, he describes the centuries of research and experimentation—from Aristotle and Pythagoras to Mendel and Darwin, from Boveri and Morgan to Crick, Watson and Franklin, all the way through the revolutionary twenty-first century innovators who mapped the human genome. “A fascinating and often sobering history of how humans came to understand the roles of genes in making us who we are—and what our manipulation of those genes might mean for our future” (Milwaukee Journal-Sentinel), The Gene is the revelatory and magisterial history of a scientific idea coming to life, the most crucial science of our time, intimately explained by a master. “The Gene is a book we all should read” (USA TODAY).

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