Ethics, Law and Governance of Biobanking

National, European and International Approaches

  • Deborah Mascalzoni

Part of the The International Library of Ethics, Law and Technology book series (ELTE, volume 14)

Table of contents

  1. Front Matter
    Pages i-viii
  2. Barbara Parodi
    Pages 15-19
  3. Naomi Hawkins
    Pages 39-51
  4. Jennifer Viberg, Mats G. Hansson, Sophie Langenskiöld, Pär Segerdahl
    Pages 121-131
  5. Ruth Chadwick, Heather Strange
    Pages 133-138
  6. Emmanuelle Rial-Sebbag, Anne Cambon-Thomsen
    Pages 139-151
  7. David Winickoff
    Pages 187-209
  8. Linus Johnsson, Stefan Eriksson, Gert Helgesson, Mats G. Hansson
    Pages 261-277

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.


BBMRI Biobanks Governance of Biobanking P3G bioethics biorepositories biorepository cell factories cell factory genetic database health database post-genomic tissue bank

Editors and affiliations

  • Deborah Mascalzoni
    • 1
  1. 1.Centre for BiomedicineEuropean Academy BolzanoBolzanoItaly

Bibliographic information

  • DOI
  • Copyright Information Springer Science+Business Media Dordrecht 2015
  • Publisher Name Springer, Dordrecht
  • eBook Packages Medicine Medicine (R0)
  • Print ISBN 978-94-017-9572-2
  • Online ISBN 978-94-017-9573-9
  • Series Print ISSN 1875-0044
  • Series Online ISSN 1875-0036
  • Buy this book on publisher's site