genetic privacy a challenge to medico legal norms

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Genetic Privacy

Author : Graeme Laurie
ISBN : 1139431536
Genre : Law
File Size : 68. 76 MB
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The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine.

Genetic Privacy

Author : Terry Sheung-Hung Kaan
ISBN : 9781783263073
Genre : Medical
File Size : 75. 22 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

Genetics Disability And The Law

Author : Aisling de Paor
ISBN : 9781108509275
Genre : Law
File Size : 41. 4 MB
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While advances in science and technology bring many advantages, we must not ignore the harm that they can cause. Rapid changes in genetic testing are a prime example, and indicators can now help to detect, address and treat diseases. However, in this new study, Aisling de Paor examines how genetic testing is also being used for non-medical reasons, for example for work opportunities and insurance coverage. Genetics, Disability and the Law is the first book of its kind to substantively consider an EU-level response to the use of genetic information. de Paor discusses how to help genetic and scientific research to evolve and grow, how to enhance public confidence in research, and how to control it so that it recognises our values and fundamental human rights. An understudied but vitally important topic, de Paor's work provides a valuable and timely contribution to the field of disability rights.

Genetic Data And The Law

Author : Mark Taylor
ISBN : 9781107378186
Genre : Law
File Size : 61. 67 MB
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Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.

Privacy A Very Short Introduction

Author : Raymond Wacks
ISBN : 9780191038808
Genre : Political Science
File Size : 28. 97 MB
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Some would argue that scarcely a day passes without a new assault on our privacy. In the wake of the whistle-blower Edward Snowden's revelations about the extent of surveillance conducted by the security services in the United States, Britain, and elsewhere, concerns about individual privacy have significantly increased. The Internet generates risks, unimagined even twenty years ago, to the security and integrity of information in all its forms. The manner in which information is collected, stored, exchanged, and used has changed forever; and with it, the character of the threats to individual privacy. The scale of accessible private data generated by the phenomenal growth of blogs, social media, and other contrivances of our information age pose disturbing threats to our privacy. And the hunger for gossip continues to fuel sensationalist media that frequently degrade the notion of a private domain to which we reasonably lay claim. In the new edition of this Very Short Introduction, Raymond Wacks looks at all aspects of privacy to include numerous recent changes, and considers how this fundamental value might be reconciled with competing interests such as security and freedom of expression. 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.

The Ethics And Governance Of Human Genetic Databases

Author : Matti Häyry
ISBN : 9781139464048
Genre : Law
File Size : 33. 67 MB
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The Medical Biobank of Umeå in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.

The Record Of The Association Of The Bar Of The City Of New York

Author : Association of the Bar of the City of New York
ISBN : STANFORD:36105063864172
Genre : Bar associations
File Size : 26. 25 MB
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Reframing Rights

Author : Sheila Jasanoff
ISBN : 9780262297783
Genre : Science
File Size : 63. 18 MB
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Legal texts have been with us since the dawn of human history. Beginning in 1953, life too became textual. The discovery of the structure of DNA made it possible to represent the basic matter of life with permutations and combinations of four letters of the alphabet, A, T, C, and G. Since then, the biological and legal conceptions of life have been in constant, mutually constitutive interplay -- the former focusing on life's definition, the latter on life's entitlements. Reframing Rights argues that this period of transformative change in law and the life sciences should be considered "bioconstitutional."Reframing Rights explores the evolving relationship of biology, biotechnology, and law through a series of national and cross-national case studies. Sheila Jasanoff maps out the conceptual territory in a substantive editorial introduction, after which the contributors offer "snapshots" of developments at the frontiers of biotechnology and the law. Chapters examine such topics as national cloning and xenotransplant policies; the politics of stem cell research in Britain, Germany, and Italy; DNA profiling and DNA databases in criminal law; clinical trials in India and the United States; the GM crop controversy in Britain; and precautionary policymaking in the European Union. These cases demonstrate changes of constitutional significance in the relations among human bodies, selves, science, and the state.

Scientific American

Author :
ISBN : UCSD:31822036147783
Genre : Science
File Size : 51. 65 MB
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Open Consent

Author : Ants Nõmper
ISBN : 9949110556
Genre : Informed consent (Medical law)
File Size : 75. 62 MB
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