Comparative Issues in the Governance of Research Biobanks Property,
In the last few years, the boom in biobanking has prompted a lively debate on a host of interrelated legal issues, such as the Gordian knot of the ownership of biological materials, as well as privacy concerns. The latter are due to the difficulty of acce
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Giovanni Pascuzzi • Umberto Izzo Matteo Macilotti Editors
Comparative Issues in the Governance of Research Biobanks Property, Privacy, Intellectual Property, and the Role of Technology
Editors Giovanni Pascuzzi Umberto Izzo Matteo Macilotti University of Trento Trento Italy
ISBN 978-3-642-33115-2 ISBN 978-3-642-33116-9 (eBook) DOI 10.1007/978-3-642-33116-9 Springer Heidelberg New York Dordrecht London Library of Congress Control Number: 2012955753 # Springer-Verlag Berlin Heidelberg 2013 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Exempted from this legal reservation are brief excerpts in connection with reviews or scholarly analysis or material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publication or parts thereof is permitted only under the provisions of the Copyright Law of the Publisher’s location, in its current version, and permission for use must always be obtained from Springer. Permissions for use may be obtained through RightsLink at the Copyright Clearance Center. Violations are liable to prosecution under the respective Copyright Law. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed on acid-free paper Springer is part of Springer Science+Business Media (www.springer.com)
Contents
1
Introduction: A Law and Technology Approach to the Law of Biobanking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Umberto Izzo, Matteo Macilotti, and Giovanni Pascuzzi
Part I 2
1
Property and Privacy in Biobanking
Research Biobanks Meet Synthetic Biology: Autonomy and Ownership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stephen R. Munzer
3
Regulating Biobanks: Another Triple Bottom Line . . . . . . . . . . . . . Roger Brownsword
4
Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States . . . . . . . . . . . . . Eric A. Feldman and Chelsea Darnell
5
Ownership of Biomedical
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