The right to know and the right not to know : genetic privacy and responsibility /
Right to know & the right not to know
edited by Ruth Chadwick, Mairi Levitt and Darren Shickle.
- Second edition.
- 1 online resource (xiii, 216 pages) : digital, PDF file(s).
- Cambridge bioethics and law .
- Cambridge bioethics and law. .
Title from publisher's bibliographic system (viewed on 05 Oct 2015).
The right to know and the right not to know : the emerging debate / Autonomy and a right not to know / Privacy and the right not to know : a plea for conceptual clarity / Biobanks and feedback / Suspects, victims and others : producing and sharing forensic genetic knowledge / Empowered by choice? / DIY genetics : the right to know your own genome / Genomics, inconvenient truths and accountability / The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy / The parental love argument against 'designing' babies : the harm in knowing that one has been selected or enhanced / The press and the public interest / The inescapability of knowing and inability to not know in the digital society / The food we eat : the right to be informed and the duty to inform / Ruth Chadwick, Mairi Levitt and Darren Shickle -- Ruth Chadwick, Mairi Levitt and Darren Shickle -- Jørgen Husted -- Graeme Laurie -- Kadri Simm -- Robin Williams and Matthias Weinroth -- Mairi Levitt -- Barbara Prainsack -- Jeantine Lunshof and Ruth Chadwick -- Henk Ten Have -- Anca Gheaus -- Joachim Allgaier -- Richard Watermeyer -- Michiel Korthals. Introduction / Part I. Philosophical and Legal Issues -- art II. Issues in Genetics -- Part III. Emerging Issues --
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.
9781139875981 (ebook)
Human chromosome abnormalities--Diagnosis--Moral and ethical aspects. Genetic disorders--Diagnosis--Moral and ethical aspects. Genetic screening--Law and legislation. Privacy, Right of.