the governance of genetic information who decides

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The Governance Of Genetic Information

Author : Heather Widdows
ISBN : 9780521509916
Genre : Law
File Size : 74. 12 MB
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This volume suggests alternative ethical frameworks and models of regulation relating to the governance of genetic information.

Genetic Privacy

Author : Terry Sheung-Hung Kaan
ISBN : 9781783263073
Genre : Medical
File Size : 69. 14 MB
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Privacy is an unwieldy concept that has eluded an essentialised definition despite its centrality and importance in the body of bioethics. The compilation presented in this volume represents continuing discussions on the theme of privacy in the context of genetic information. It is intended to present a wide range of expert opinion in which the notion of privacy is examined from many perspectives, in different contexts and imperatives, and in different societies, with the hope of advancing an understanding of privacy through the examination and critique of some of its evolving component concepts such as notions of what constitute the personal, the context of privacy, the significance and impact of the relational interests of others who may share the same genetic inheritance, and mechanisms for the protection of privacy (as well as of their limitations), among others. More specifically, the discussions in this volume encourages us to think broadly about privacy, as encompassing values that are entailed in the sociality of context and of relations, and also as freedom from illegitimate and excessive surveillance. A long-standing question that continues to challenge us is whether genetic information should be regarded as exceptional, as it is often perceived. A conclusion that could be derived from this volume is that while genetic information may be significant, it is not exceptionally so. The work presented in this volume underlines the continuing and growing relevance of notions of privacy to genomic science, and the need to take ownership of a genetic privacy for the future through broad, rigorous and open discussion. Contributors: Alastair V Campbell, Benjamin Capps, Jacqueline JL Chin, Oi Lian Kon, Kenji Matsui, Thomas H Murray, Nazirudin Mohd Nasir, Dianne Nicol, Anh Tuan Nuyen, Onora O'Neill, Margaret Otlowski, Yvette van der Eijk, Chunshui Wang, Ross S White. Contents:The Notion of Genetic Privacy (Calvin WL Ho and Terry SH Kaan)Can Data Protection Secure Personal Privacy? (Onora O'Neill)Navigating the Privacy Complex of Self, Other and Relationality (Calvin WL Ho)Privacy and Biomedical Research: A Role-based Approach (Anh Tuan Nuyen)Socio-political Discourses on Genetic Privacy in Japan (Kenji Matsui)Genetic Privacy: A Challenge to Genetic Testing in China (Chunshui Wang)Don't Ask, Don't Tell: Exploring the Limits of Genetic Privacy in Singapore (Terry SH Kaan)Privacy, Rights and Biomedical Data Collections (Benjamin Capps)Individual Right vs. Public Interest: The Role of the Islamic Religious Council of Singapore in Bioethics Consultation on Genetic Privacy (Nazirudin M Nasir)What — If Anything — Is Special about “Genetic Privacy”? (Jacqueline JL Chin and Alastair V Campbell)Genetic Privacy in the United States: Genetic Exceptionalism, GINA, and the Future of Genetic Testing (Thomas H Murray and Ross S White)The Regulatory Framework for Protection of Genetic Privacy in Australia (Margaret Otlowski and Diane Nicol)Privacy Matters in Nicotine Addiction (Yvette van der Eijk)Human Genomics and Privacy (Oi Lian Kon) Readership: Students and professionals in medical law and medical ethics, public policy, Asian studies and public health. Keywords:Bioethics;Biotechnology;Genetics;Policy;Public;Trust;Regulation of Research;Singapore;Privacy

Biobank Governance

Author : Julia Berdin
ISBN : 9783845282640
Genre : Law
File Size : 76. 75 MB
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Biobanken, in denen international und im großen Stil menschliche Körpersubstanzen und persönliche Daten zu Forschungszwecken gesammelt werden, bergen ein enormes Potenzial für die sich exponentiell entwickelnde medizinische Forschung. Die gespendeten Proben und Daten können jedoch viel über den einzelnen Spender offenbaren und diesen und mit ihm verbundene Personen Diskriminierungsrisiken aussetzen. Die Arbeit stellt sich insbesondere der Frage, ob eine traditionell erforderliche individuelle Einwilligung des Spenders in zu diesem Zeitpunkt jedoch noch unbestimmte zukünftige Forschungszwecke ausreichen kann oder ob und wie der Spender weitergehend an Entscheidungen das Schicksal seiner sensiblen Proben und Daten betreffend beteiligt werden kann und muss. Dabei werden insbesondere innovative Trust-Modelle auf ihr Potenzial im deutschen Rechtsraum hin untersucht.

Global Health And International Community

Author : John Coggon
ISBN : 9781780935591
Genre : Political Science
File Size : 41. 14 MB
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Global health arguably represents the most pressing issues facing humanity. Trends in international migration and transnational commerce render state boundaries increasingly porous. Human activity in one part of the world can lead to health impacts elsewhere. Animals, viruses and bacteria as well as pandemics and environmental disasters do not recognize or respect political borders. It is now widely accepted that a global perspective on the understanding of threats to health and how to respond to them is required, but there are many practical problems in establishing such an approach. This book offers a foundational study of these urgent and challenging problems, combining critical analysis with practically focused policy contributions. The contributors span the fields of ethics, human rights, international relations, law, philosophy and global politics. They address normative questions relating to justice, equity and inequality and practical questions regarding multi-organizational cooperation, global governance and international relations. Moving from the theoretical to the practical, Global Health and International Community is an essential resource for scholars, students, activists and policy makers across the globe.

Medical Law A Very Short Introduction

Author : Charles Foster
ISBN : 9780191636011
Genre : Law
File Size : 59. 22 MB
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Medical law is concerned with our bodies, and what happens to them during and after our lives. When things go wrong with our bodies, we want to know what our rights are, and what governs the conduct of the clinicians into whose hands we put our lives and limbs. Dealing with matters of life and death, it can therefore have a fundamental impact on medical practice. Headlines in the media often involve the core issues of medical law - organ transplantation, abortion, withdrawal of treatment, euthanasia, confidentiality, research on humans - these are topics that affect us all. Headlines can misrepresent, however. In order to fully understand the issues and their relevance, we have to delve into the cases and into the principles behind them. In this highly readable Very Short Introduction, Charles Foster explores different examples to illustrate the key problems and principles of medical law. ABOUT THE SERIES: The Very Short Introductions series from Oxford University Press contains hundreds of titles in almost every subject area. These pocket-sized books are the perfect way to get ahead in a new subject quickly. Our expert authors combine facts, analysis, perspective, new ideas, and enthusiasm to make interesting and challenging topics highly readable.

Genetic Governance

Author : Robin Bunton
ISBN : 9781134258895
Genre : Social Science
File Size : 32. 13 MB
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Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available, challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the socio-political effects of this new genetic knowledge and the changes in practice that are currently impacting on our lives. Containing contributions from key international researchers, this book examines the broader issues of genetic debates and looks at how prediction and risk assessment is being changed in the arenas of health, medicine and reproduction, bringing new insight on the dangers of surveillance, regulation and increased inequality. Developed out of the Taylor and Francis journal Critical Public Health, the book considers the implications of developments in genetics for contemporary liberal governance, as well as for the future of healthcare and public health.

Creation And Governance Of Human Genetic Research Databases

Author : OECD
ISBN : 9789264028531
Genre :
File Size : 78. 93 MB
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Summarises proceedings of a conference looking at examples of human genetic research databases, how they are established, how they are managed and governed, how they might be commercialised, and what the policy considerations might be.

The Connected Self

Author : Heather Widdows
ISBN : 9781107008601
Genre : Law
File Size : 20. 20 MB
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Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice.

Principles Of Pharmacogenetics And Pharmacogenomics

Author : Russ B. Altman
ISBN : 9781107377479
Genre : Science
File Size : 25. 4 MB
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The study of pharmacogenetics and pharmacogenomics focuses on how our genes and complex gene systems influence our response to drugs. Recent progress in clinical therapeutics has led to the discovery of new biomarkers that make it technically easier to identify groups of patients which are more or less likely to respond to individual therapies. The aim is to improve personalised medicine – not simply to prescribe the right medicine, but to deliver the right drug at the right dose at the right time. This textbook brings together leading experts to discuss the latest information on how human genetics impacts drug response phenotypes. It presents not only the basic principles of pharmacogenetics, but also clinically valuable examples that cover a broad range of specialties and therapeutic areas. This textbook is an invaluable introduction to pharmacogenetics and pharmacogenomics for health care professionals, medical students, pharmacy students, graduate students and researchers in the biosciences.

New Challenges For Biobanks

Author : Kris Dierickx
ISBN : 9050959741
Genre : Law
File Size : 38. 30 MB
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The book is a collection of papers presented during an international conference, held in Leuven May 18-20, 2009, organized by the Centre for Biomedical Ethics and Law of the Catholic University of Leuven and the GeneBanC project.

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