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The right to know and the right not to know: genetic privacy and responsibility

Research output: Book/Report/ProceedingsBook

Published
  • Ruth Chadwick (Editor)
  • Mairi Levitt (Editor)
  • Darren Shickle (Editor)
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Abstract

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 fl ow
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 our 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.