Saviour Siblings and the Regulation of Assisted Reproductive Technology: Harm, Ethics and Law

235 Pages·2015·1.977 MB·English

by  Malcolm K. Smith

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Saviour SiblingS and the regulation of
aSSiSted reproductive technology
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Saviour Siblings and the
Regulation of Assisted
Reproductive Technology
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1 Harm, Ethics and Law
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o] MalcolM K. SMith
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e Australian Centre for Health Law Research,
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D Queensland University of Technology, Australia
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First published 2015 by Ashgate Publishing
Published 2016 by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
711 Third Avenue, New York, NY 10017, USA
Routledge is an imprint of the Taylor & Francis Group, an informa business
7 Copyright © Malcolm K. Smith 2015
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l Malcolm K. Smith has asserted his right under the Copyright, Designs and Patents Act, 1988, to
ri be identified as the author of this work.
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9 All rights reserved. No part of this book may be reprinted or reproduced or utilised in any
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1 form or by any electronic, mechanical, or other means, now known or hereafter invented,
0 including photocopying and recording, or in any information storage or retrieval system,
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3 without permission in writing from the publishers.
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Notice:
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o Product or corporate names may be trademarks or registered trademarks, and are used
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e only for identification and explanation without intent to infringe.
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D
n British Library Cataloguing in Publication Data
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S A catalogue record for this book is available from the British Library.
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a
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n The Library of Congress has cataloged the printed edition as follows:
r
o Smith, Malcolm K., author.
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l Saviour siblings and the regulation of assisted reproductive technology : harm, ethics and law /
a
C by Malcolm K. Smith.
of pages cm
y Includes bibliographical references and index.
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si ISBN 978-1-4094-6096-1 (hardback)1. Savior siblings--Legal status, laws, etc.--Great Britain.
r
e 2. Savior siblings-- Legal status, laws, etc.--Australia. 3. Procurement of organs, tissues, etc.--Law
v
i and legislation--Great Britain. 4. Procurement of organs, tissues, etc.--Law and legislation--Austra-
n
U lia. 5. Fertilization in vitro, Human--Law and legislation--Great Britain. 6. Fertilization in vitro,
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y Human--Law and legislation--Australia. 7. Medical ethics. I. Title.
b K3611.A77S65 2015
d 344.4104’19--dc23
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d
a
o 2015004754
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ISBN 978-1-4094-6096-1 (hbk)
ISBN 978-1-3156-0766-5 (ebk)
Contents
7 List of Abbreviations vii
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0 Preface ix
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pr 1 Conceiving Saviour Children: Technological Advances, Ethical
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Concern and Legitimate Regulatory Oversight? 1
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0
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0 2 The Regulatory Landscape Relevant to Assisted
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3 Reproductive Technology 9
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o] 3 Regulating Access to and the Delivery of Pre-implantation
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e Tissue-typing Services 53
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a 4 Liberty and Reproductive Decision-Making 83
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ni 5 The Harm Principle as a Means for Justifying State Intervention
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o and Regulation 107
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6 Creating Saviour Children: What is the Harm? 129
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it 7 Creating Saviour Children: The Wider Ethical and Moral
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er Arguments 167
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8 Regulating Assisted Reproductive Technology Services for the
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y Creation of Saviour Children: A Way Forward 183
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d
e
d Bibliography 207
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o Index 221
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List of Abbreviations
7 ACT Australian Capital Territory
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0 AHEC Australian Health Ethics Committee
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l ART Assisted reproductive technology
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pr Cth Commonwealth of Australia
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EUTCD European Union Tissues and Cells Directive
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0 FSA Fertility Society of Australia
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0 HFEA Human Fertilisation and Embryology Authority
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3 HLA Human leukocyte antigen
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t HSCT Hematopoietic stem cell transplantation
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o] HTA Human Tissue Authority
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e ITA Infertility Treatment Authority
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D IVF In vitro fertilisation
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a NBCC National Bioethics Consultative Committee
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a, NHMRC National Health and Medical Research Council
ni NSW New South Wales
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o NT Northern Territory
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l PGD Pre-implantation genetic diagnosis
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Qld Queensland
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o RATE Regulatory Authority for Tissue and Embryos
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it RTC Reproductive Technology Council
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er RTAC Reproductive Technology Accreditation Committee
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i SA South Australia
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SACRT South Australian Council on Reproductive Technology
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y Tas Tasmania
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d UK United Kingdom
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d USA United States of America
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o VARTA Victorian Assisted Reproductive Treatment Authority
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w Vic Victoria
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D VLRC Victorian Law Reform Commission
WA Western Australia
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Preface
7 My interest in the topic of this book was sparked by an assignment that
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0 was set in 2004 as part of my Master of Laws course in health law. At that
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l time, the debate in the United Kingdom (UK) concerning the creation of
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pr so-called ‘saviour siblings’ was very much in the public sphere, as the issue
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was covered in the media; the impact of regulatory policy on this topic was
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0 publicly conveyed through the personal stories of a number of families who
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0 shared their experiences publicly. These families were struggling in their
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3 attempts to access assisted reproductive technology (ART) services, so that
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t they could purposely conceive children as tissue donors for the benefit of their
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o] sick children. Barriers were imposed on access by the UK’s ART regulatory
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e body – the Human Fertilisation and Embryology Authority (HFEA). Under
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D this policy, some families were denied access to the technology, while others
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a were not. The thought that the ethical and moral views of other people – who
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a, had no direct involvement with the issues facing these families – were being
ni relied upon to justify the imposition of restrictive policies, encouraged me to
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o research this topic further. At that time, it was not clear to me why illogical
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l distinctions were being drawn between families who were seeking to pursue
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the same end – which might ultimately result in them saving the lives of their
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o children. Although I now have a deep understanding of the reasoning that
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it underpinned this distinction, I am perhaps no closer to accepting it as a valid
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er justification for denying one family’s request, but not the other’s. It might be
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i said that this concern is now merely a hypothetical one, as the UK regulator
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reversed its restrictive approach on this issue. However, as I discuss in this
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y book, this distinction is still drawn in some Australian states, albeit indirectly.
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d Furthermore, the regulation of this issue has progressed in a precautious way,
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d despite the fact that there is no evidence to suggest that those children who
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o have been conceived as ‘saviours’ are harmed.
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w In researching and writing this book, I have had the opportunity to reflect
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D upon why it is that certain ethical and moral objections seem to be more
compelling than others, at least from a regulatory point of view. As is clear from
the focus that I adopt for analysing the issue of conceiving saviour children,
this has led me to conclude that some of the wider ethical and moral concerns
might not always be relevant to determining whether or not a particular
type of conduct can be justifiably restricted by the state. Nevertheless, these
ethical principles and theories are valuable as they help us to reflect upon how
our actions might, and do, affect others and whether we are acting ethically.