Ethics, Law and Governance of Biobanking

Name: Ethics, Law and Governance of Biobanking
SKU: 22826188
Price: 297.00 NZD
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National, European and International Approaches

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Hardback

Series:

The International Library of Ethics, Law and Technology

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Description

Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks. Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.

Author Biography:

Author's affiliation is: Deborah Mascalzoni Centre for Biomedicine European Academy Bolzano Viale Druso 1, 39100 Bolzano

Release date NZ

February 6th, 2015

Audience

Professional & Vocational

Contributor

Edited by Deborah Mascalzoni

Illustrations

VIII, 277 p.

Pages

277

Series

The International Library of Ethics, Law and Technology

Dimensions

155x235x18

ISBN-13

9789401795722

Product ID

22826188

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