the governance of genetic information who decides

Download Book The Governance Of Genetic Information Who Decides in PDF format. You can Read Online The Governance Of Genetic Information Who Decides here in PDF, EPUB, Mobi or Docx formats.

The Governance Of Genetic Information

Author : Heather Widdows
ISBN : 9780521509916
Genre : Law
File Size : 62. 22 MB
Format : PDF, Docs
Download : 444
Read : 261

Download Now


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 : 61. 89 MB
Format : PDF, ePub, Mobi
Download : 801
Read : 382

Download Now


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

Global Governance Of Genetic Resources

Author : Sebastian Oberthür
ISBN : 9781135135485
Genre : Business & Economics
File Size : 47. 28 MB
Format : PDF, Mobi
Download : 412
Read : 1313

Download Now


This book analyses the status and prospects of the global governance of Access Benefit Sharing (ABS) in the aftermath of 2010’s Nagoya Protocol to the Convention on Biological Diversity (CBD). The CBD’s initial 1992 framework of global ABS governance established the objective of sharing the benefits arising from the use of genetic resources fairly between countries and communities. Since then, ABS has been a contested issue in international politics – not least due to the failure of effective implementation of the original CBD framework. The Nagoya Protocol therefore aims to improve and enhance this framework. Compared to the slow rate of progress on climate change, it has been considered a major achievement of global environmental governance, but it has also been coined a ‘masterpiece of ambiguity’. This book analyses the role of a variety of actors in the emergence of the Nagoya Protocol and provides an up-to-date assessment of the core features of the architecture of global ABS governance. This book offers a central resource regarding ABS governance for those working on and interested in global environmental governance. This is achieved by focusing on two broad themes of the wider research agenda on global environmental governance, namely architecture and agency. Furthermore, individual chapter contributions relate and link ABS governance to other prominent debates in the field, such as institutional complexes, compliance, market-based approaches, EU leadership, the role of small states, the role of non-state actors and more. Partly due to its seeming technical complexity, ABS governance has so far not been at the centre of attention of scholars and practitioners of global environmental governance. In this book, care is taken to provide an accessible account of key functional features of the governance system which enables non-specialists to gain a grasp on the main issues involved, allowing the issue of ABS governance to move centre-stage and be more fully recognised in discussions on global environmental governance.

The Global Governance Of Genetic Resources

Author : Florian Rabitz
ISBN : 9781351984706
Genre : Political Science
File Size : 81. 44 MB
Format : PDF, ePub, Docs
Download : 591
Read : 821

Download Now


Multi-institutional governance architectures are increasingly common in world politics, yet how do they evolve over time? This book develops a fresh conceptual approach by distinguishing two main types of institutional change and by proposing the strategic context within which governments make decisions regarding international cooperation as the main driving factor. Applying this theoretical framework to the case of genetic resources, it shows how the scope for change has persistently been circumscribed by asymmetries in the global biotechnology sector. Taking a broad view of the underlying technological, legal and economic factors, the book analyzes the formation of international regimes linking access to genetic resources to the fair and equitable sharing of the benefits arising out of their utilization. Covering negotiations in the areas of seeds, intellectual property rights, pandemic influenza viruses and marine genetic resources, the author shows how governments have persistently faced the problem of ensuring cooperation among actors with widely differing interests. This led them to opt for a strategy of institutional layering, whereby new international instruments are gradually built upon pre-existing ones. In addition to giving a comprehensive overview of the international governance of Access and Benefit-sharing within the wider context of modern biotechnology, the argument developed here enables a new perspective for studying institutional change in multi-institutional governance architectures.

Genetic Governance

Author : Robin Bunton
ISBN : 9781134258895
Genre : Social Science
File Size : 29. 30 MB
Format : PDF, ePub, Docs
Download : 581
Read : 425

Download Now


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 : 26. 13 MB
Format : PDF, Mobi
Download : 843
Read : 807

Download Now


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.

Human Genes And Neoliberal Governance

Author : Antoinette Rouvroy
ISBN : 9781134066681
Genre : Law
File Size : 80. 40 MB
Format : PDF, Kindle
Download : 911
Read : 809

Download Now


Original and interdisciplinary, this is the first book to explore the relationship between a neoliberal mode of governance and the so-called genetic revolution. Looking at the knowledge-power relations in the post-genomic era and addressing the pressing issues of genetic privacy and discrimination in the context of neoliberal governance, this book demonstrates and explains the mechanisms of mutual production between biotechnology and cultural, political, economic and legal frameworks. In the first part Antoinette Rouvroy explores the social, political and economic conditions and consequences of this new ‘perceptual regime’. In the second she pursues her analysis through a consideration of the impact of ‘geneticization’ on political support of the welfare state and on the operation of private health and life insurances. Genetics and neoliberalism, she argues, are complicit in fostering the belief that social and economic patterns have a fixed nature beyond the reach of democratic deliberation, whilst the characteristics of individuals are unusually plastic, and within the scope of individual choice and responsibility. This book will be of interest to all students of law, sociology and politics.

Crop Genetic Resources As A Global Commons

Author : Michael Halewood
ISBN : 9781844078929
Genre : Business & Economics
File Size : 75. 81 MB
Format : PDF, Docs
Download : 464
Read : 1150

Download Now


The Earth's plant genetic resources are a common inheritance of all humankind, which should be held in shared trust for a common future. A key component of the global genetic commons is agricultural biodiversity. Our food and livelihood security depend on the sustained management of these diverse biological resources that are important for food and agriculture. Whilst agricultural biodiversity originates in specific farming communities, it has been shared widely and is considered by many to be part of the much-threatened global commons.This book is about the creation, management and use of the global crop commons. It focuses primarily on the legal and administrative construct that provides the basis of the global crop commons, that is, the multilateral system of access and benefit-sharing created by the International Treaty on Plant Genetic Resources for Food and Agriculture. This is particularly significant because it transcends the traditional dichotomy between privatization and total governmental control. It came into effect in 2006 and the book describes its origins and implementation since then, showing how many international organizations and some developing countries are moving quickly with implementation, while other countries are moving slowly and some multinational corporations are expressing misgivings about the system overall. The authors further analyze current challenges and how they might be resolved.

The Connected Self

Author : Heather Widdows
ISBN : 9781107008601
Genre : Law
File Size : 32. 71 MB
Format : PDF, Mobi
Download : 579
Read : 809

Download Now


Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice.

Society And Genetic Information

Author : Judit S ndor
ISBN : 963924175X
Genre : Religion
File Size : 20. 7 MB
Format : PDF, ePub
Download : 275
Read : 1236

Download Now


The genetic era has given rise to significant legal dilemmas: who may own genetic data, when can a genetic test be performed on children, how can genetic-based discrimination be avoided, or to what extent and in what ways can genetic data be protected? The book addresses the social, ethical, and legal implications of collecting, storing, analyzing, and commercializing genetic information. Prominent biologists, medical doctors, lawyers, anthropologists, philosophers, sociologists, and theologians from different countries provide their views on the complex biological and social impacts of the imminent proliferation of genetic information. The authors explore the various uses and applications of genetic information, and discuss the current dilemmas of making laws in the field of genetics. Different models of national genome projects and biobanks, as well as the related international legal documents and national laws are also discussed. Various genome projects and biobanks are analyzed in detail.

Top Download:

Best Books