PRINCIPLES AND PRACTICE IN BIOBANK GOVERNANCE
To my mother Margaret, who has taught me patience and compassion
in difficult times and to never give up even when the end seems near.
Jane Kaye, 15 October 2009
Principles and Practice in
Biobank Governance
Edited by
JANE KAYE
University of Oxford, UK
MARK STRANGER
University of Tasmania, Australia
First published 2009 by Ashgate Publishing
Published 2016 by Routledge
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Copyright 2009 Jane Kaye and Mark Stranger
Jane Kaye and Mark Stranger have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the editors of this work.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.
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Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.
British Library Cataloguing in Publication Data
Principles and practice in biobank governance.
1. Biobanks--Management. 2. Biobanks--Moral and ethical aspects.
I. Kaye, Jane, 1962- II. Stranger, Mark.
576.5'0752-dc22
Library of Congress Cataloging-in-Publication Data
Principles and practice in biobank governance / [edited] by Jane Kaye and Mark Stranger.
p. cm.
Includes bibliographical references and index.
ISBN 978-0-7546-7825-0 (hardcover)
1. Tissue banks--Management. 2. Biobanks--Management. 3. Tissues--Collection and preservation--Government policy. 4. Biological specimens--Collection and preservation-Government policy. 5. Procurement of organs, tissues, etc.--International cooperation. 6. Bioethics. I. Kaye, Jane, 1962- II. Stranger, Mark.
[DNLM: 1. Biological Specimen Banks--standards. 2. Clinical Governance. 3. Public Policy. QU 23 P957 2009]
RD127.P76 2009
362.1783--dc22
2009030145
ISBN 9780754678250 (hbk)
ISBN 9781315602158 (ebk)
Contents
Mark Stranger and Jane Kaye
Dianne Nicol and Christine Critchley
Nadja Kanellopoulou
David E. Winickoff
Lukas Gundermann and Ulrich Stockter
Margaret Otlowski
Antonio Casado da Rocha and Ismael Etxeberria Agiriano
Kristien Hens and Kris Dierickx
R. Jean Cadigan and Arlene M. Davis
David Townend, Mark J. Taylor, Jessica Wright and Dita Wickins-Drazilova
Loane Skene
Atieh Zarabzadeh, R. William G. Watson, Geoff Bradley and Jane Grimson
Emmanuelle Rial-Sebbag, Aurlie Mahalatchimy, Dennis Chartier and Anne Cambon-Thomsen
Jane Kaye
Karine Bdard, Susan Wallace, Stephanie Lazor and Bartha Maria Knoppers
Martin Richards, Adrienne Hunt and Graeme Laurie
Trudo Lemmens and Lisa Austin
David Weisbrot
List of Figures and Table
Figures
Table
Notes on Contributors
Lisa Austin is trained as a lawyer (LLB [Toronto], member of the Bar of Ontario) and a philosopher (PhD, MA [Toronto]), and is currently an associate professor at the University of Toronto Faculty of Law. Prior to joining the faculty, she served as law clerk to Mr Justice Frank Iacobucci of the Supreme Court of Canada. Professor Austins current research focuses on theories of privacy, including the relationship between privacy and identity, the role of consent, and the nature of private places. Her work places a particular emphasis on understanding the challenges that new technologies pose to our understandings of privacy and the implications of this for the various legal regimes that protect privacy interests.
Karine Bdard graduated with a BSc in Microbiology from Laval University in 2002 and a MA degree in Bioethics in 2005. Her project looked at the ethical issues perceived by lay populations regarding biobanking. She also completed during year 2007-2008 several courses of the master degree in Genetic Counselling at McGill University. Karine has been a research associate with the HumGen International team since 2005. Her tasks are diverse and her research topic focuses on population genetic research, biobanks and public participation. She is currently working with Legal and Ethics Affairs of the CARTaGENE biobank and coordinating the ELSI and Privacy Task Force of the Partnership for Tomorrow Project, a Canadian resource dedicated to health research. Karine has also been a member of the Research Ethics Board of Notre Dame hospital (CHUM) since 2003.
Geoff Bradley is a research fellow of Trinity College Dublin and a part time lecturer in the School of Mathematics, TCD. He completed a PhD in Computational Physics in 2000, and an MSc in High Performance Computing in 1998. Geoff is Executive Director (acting) of the Trinity Centre for High Performance Computing, where he has responsibility for the strategic development of HPC in Trinity, and the overall management of the centre research projects, software development, and services. Dr Bradley has over 10 years experience working in the fields of High Performance Computing and Distributed Data Management. He has been involved in a number of large scale European HPC projects and served on the board of HPC-Europa a pan European Research infrastructure on HPC. His research interests include algorithm design and development particularly in the fields of molecular dynamics and health informatics.
R. Jean Cadigan, PhD, is an anthropologist with the Center for Genomics and Society at the University of North Carolina at Chapel Hill. Her training is in medical and psychological anthropology as well as human development. Her current research focuses on the ethical, legal, and social implications of genetic research, with particular focus on biobanks.
Anne Cambon-Thomsen is an MD, with an MA in Human Biology and a degree in Health Ethics. She is Director of Research in CNRS and presently leads a multidisciplinary team on Genomics, Health, Society, involving also human and social sciences in the context of research in epidemiology and public health. This team is part of an Inserm unit U558 entitled Epidemiology and analyses in Public Health: Risks, chronic diseases and handicaps at the Faculty of Medicine in Toulouse. She was a member of the CCNE (National Ethics Advisory Committee in France) from 2002 to 2004. She is currently a member of the Advisory Committee for Priority 1 (Genomics and Biotechnology for Health) of the 6th EU R&D Framework and of the Scientific Advisory Board of Genome Quebec. She has been rapporteur of an expert group at EU level that produced a report and recommendations in 2004 on ethical, legal and social aspects of genetic testing.
Antonio Casado da Rocha
