The International Library of Ethics, Law and Technology

Ethics, Law and Governance of Biobanking

National, European and International Approaches

Editors: Mascalzoni, Deborah (Ed.)

  • Offers a review of the existing regulations with regards to biobanking in the western countries
  • Introduces new theoretical developments in biobanking coming from the leading experts in the field on both the legal and ethical level
  • Develops tailored governance practices from its focus on the different specific biobank configurations
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Buy this book

eBook $119.00
price for USA (gross)
  • ISBN 978-94-017-9573-9
  • Digitally watermarked, DRM-free
  • Included format: PDF, EPUB
  • ebooks can be used on all reading devices
  • Immediate eBook download after purchase
Hardcover $159.00
price for USA
  • ISBN 978-94-017-9572-2
  • Free shipping for individuals worldwide
  • Usually dispatched within 3 to 5 business days.
Softcover $159.00
price for USA
  • Customers within the U.S. and Canada please contact Customer Service at 1-800-777-4643, Latin America please contact us at +1-212-460-1500 (Weekdays 8:30am – 5:30pm ET) to place your order.
  • Due: November 18, 2016
  • ISBN 978-94-024-0521-7
  • Free shipping for individuals worldwide
About this book

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.

About the authors

Author's affiliation is:

Deborah Mascalzoni

Centre for Biomedicine

European Academy Bolzano

Viale Druso 1, 39100 Bolzano

Reviews

“This book examines the ethical approach to biobanking law and policy from a European perspective, both national and international. It provides case studies and general overviews of specific policies that surround biobanking issues while focusing on issues of privacy. … The audience includes those interested in policymaking in the global context. Lawyers, policymakers, students, and research ethicists all would find this book helpful.” (Jaime Konerman-Sease, Doody's Book Reviews, November, 2015)


Table of contents (18 chapters)

  • Ethics Law and Governance of Biobanking: A Very Complex Normative Puzzle

    Mascalzoni, Deborah

    Pages 1-14

  • Biobanks: A Definition

    Parodi, Barbara

    Pages 15-19

  • A Participatory Space Beyond the “Autonomy Versus Property” Dichotomy

    Tallacchini, Mariachiara

    Pages 21-38

  • Intellectual Property and Biobanks

    Hawkins, Naomi

    Pages 39-51

  • Consent, Privacy and Property in the Italian Biobanks Regulation: A Hybrid Model Within EU?

    Macilotti, Matteo (et al.)

    Pages 53-77

Buy this book

eBook $119.00
price for USA (gross)
  • ISBN 978-94-017-9573-9
  • Digitally watermarked, DRM-free
  • Included format: PDF, EPUB
  • ebooks can be used on all reading devices
  • Immediate eBook download after purchase
Hardcover $159.00
price for USA
  • ISBN 978-94-017-9572-2
  • Free shipping for individuals worldwide
  • Usually dispatched within 3 to 5 business days.
Softcover $159.00
price for USA
  • Customers within the U.S. and Canada please contact Customer Service at 1-800-777-4643, Latin America please contact us at +1-212-460-1500 (Weekdays 8:30am – 5:30pm ET) to place your order.
  • Due: November 18, 2016
  • ISBN 978-94-024-0521-7
  • Free shipping for individuals worldwide
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Bibliographic Information

Bibliographic Information
Book Title
Ethics, Law and Governance of Biobanking
Book Subtitle
National, European and International Approaches
Editors
  • Deborah Mascalzoni
Series Title
The International Library of Ethics, Law and Technology
Series Volume
14
Copyright
2015
Publisher
Springer Netherlands
Copyright Holder
Springer Science+Business Media Dordrecht
eBook ISBN
978-94-017-9573-9
DOI
10.1007/978-94-017-9573-9
Hardcover ISBN
978-94-017-9572-2
Softcover ISBN
978-94-024-0521-7
Series ISSN
1875-0044
Edition Number
1
Number of Pages
VIII, 277
Topics