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E-raamat: Right to Know and the Right Not to Know: Genetic Privacy and Responsibility

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  • Formaat: EPUB+DRM
  • Sari: Cambridge Bioethics and Law
  • Ilmumisaeg: 04-Sep-2014
  • Kirjastus: Cambridge University Press
  • Keel: eng
  • ISBN-13: 9781316055014
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  • Formaat: EPUB+DRM
  • Sari: Cambridge Bioethics and Law
  • Ilmumisaeg: 04-Sep-2014
  • Kirjastus: Cambridge University Press
  • Keel: eng
  • ISBN-13: 9781316055014

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The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others' genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media.

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This book re-examines privacy in a world where genome sequencing is cheap, databases can be large, and access rights are hidden.
List of contributors
ix
Acknowledgements xiii
Introduction 1(10)
Ruth Chadwick
Mairi Levitt
Darren Shickle
Part I Philosophical and legal issues
11(42)
1 The right to know and the right not to know: the emerging debate
13(11)
Ruth Chadwick
Mairi Levitt
Darren Shickle
2 Autonomy and a right not to know
24(14)
Jørgen Husted
3 Privacy and the right not to know: a plea for conceptual clarity
38(15)
Graeme Laurie
Part II Issues in genetics
53(78)
4 Biobanks and feedback
55(15)
Kadri Simm
5 Suspects, victims and others: producing and sharing forensic genetic knowledge
70(15)
Robin Williams
Matthias Wienroth
6 Empowered by choice?
85(15)
Mairi Levitt
7 DIY genetics: the right to know your own genome
100(16)
Barbara Prainsack
8 Genomics, inconvenient truths and accountability
116(15)
Jeantine Lunshof
Ruth Chadwick
Part III Emerging issues
131(78)
9 The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy
133(18)
Henk Ten Have
10 The parental love argument against `designing' babies: the harm in knowing that one has been selected or enhanced
151(14)
Anca Gheaus
11 The press and the public interest
165(15)
Joachim Allgaier
12 The inescapability of knowing and inability to not know in the digital society
180(16)
Richard Watermeyer
13 The food we eat: the right to be informed and the duty to inform
196(13)
Michiel Korthals
Index 209
Ruth Chadwick is Professor of Bioethics at Manchester University and chair of the Human Genome Organisation (HUGO) Committee on Ethics Law and Society. She directed the ESRC Centre for Economic and Social Aspects of Genomics (Cesagen) from 2002 to 2013. Mairi Levitt is a senior lecturer in the Department of Politics, Philosophy and Religion at Lancaster University, where she works in empirical bioethics and researches ethical and social issues in genetics. Darren Shickle is Professor of Public Health at the University of Leeds, where his research interests include public health ethics, public health genetics, ophthalmic public health and HIV and sexual health.