Description
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.
Chapter
Part I Philosophical and legal issues
1 The right to know and the right not to know: the emerging debate
Biobanks and the right to know
Trends in ethical approaches
2 Autonomy and a right not to know
A problem out of a problem
Autonomy: the thin conception
Autonomy: the thick conception
Moralism as well as paternalism?
3 Privacy and the right not to know: a plea for conceptual clarity
Protecting privacy in law
Part II Issues in genetics
Looking back – the debates from the dawn of biobanking
Why has feedback become such a hot topic?
Arguments against feedback
Proposals for regulating feedback
5 Suspects, victims and others: producing and sharing forensic genetic knowledge
Forensic genetics: forms of knowledge and their application
The right to be known and the right to be forgotten
Choice and responsibility
Choosing as self-expression
Genetic tests, treatment and enhancement
7 DIY genetics: the right to know your own genome
What does it mean ‘to know your own genome’?
What does it mean to ‘know’ your genome?
What does it mean to have a ‘right’ to know one’s genome?
Arguments in favour of the right to know your genome
The right not to know one’s genome, and ‘the right to be forgotten’
8 Genomics, inconvenient truths and accountability
Science, ethics and accountability
Accountability in science
Genomics, truth and accountability
Genomics research in human populations: the case of the Havasupai
Beyond consent: moral matters for indigenous people
Science, inconvenient truths and accountability: some conclusions
9 The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy
Delineating and expanding the public domain
10 The parental love argument against ‘designing’ babies: the harm in knowing that one has been selected or enhanced
The traditional argument against parental design
The child’s interest in unconditional parental love
11 The press and the public interest
Media coverage of biotechnology and genetics
Public opinion and attitudes towards genetics biotechnology
12 The inescapability of knowing and inability to not know in the digital society
The public, science and policy
Mobilizing the right to know: the polylogue
Retracting the right to know
13 The food we eat: the right to be informed and the duty to inform
Introduction: the evolving gap between food production and consumption as the context of the desire to know
Roles of consumers and their interests in knowledge
Information about food, labelling and certification
Certification by a third party
Increasing and decreasing trust
Problems of information: the example of health advice
Co-production as an alternative strategy to regain confidence
The Right to Know and the Right Not to Know
：Genetic Privacy and Responsibility
( Cambridge Bioethics and Law )
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