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Shih-Ning Then
Children
as Tissue
Donors
Regulatory Protection, Medical Ethics,
and Practice
Children as Tissue Donors
Shih-Ning Then
Children as Tissue Donors

Regulatory Protection, Medical Ethics,
and Practice
123
Shih-Ning Then
Queensland University of Technology
Brisbane, QLD, Australia
ISBN 978-981-13-3046-9 ISBN 978-981-13-3047-6 (eBook)

https://doi.org/10.1007/978-981-13-3047-6
Library of Congress Control Number: 2018958938
© Springer Nature Singapore Pte Ltd. 2018

This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part
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The use of general descriptive names, registered names, trademarks, service marks, etc. in this
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The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721,
Singapore
For Mum and Dad.
Preface
This monograph is the result of research that began almost a decade ago. At that
time, I recall being surprised at how little had been written about children who act
as tissue donors. While the ethical concerns were relatively well articulated, little
consideration had been given to their situation in the legal or regulatory literature.
There was also very little known about how children who had acted as donors fared
in the short or long term. During the course of this research, it has been reassuring
to see more research, from the clinical domain, examining outcomes for donor
children and more professional bodies articulating guidelines or standards con-
cerned with donor children. While more work needs to be done, this demonstrates
an increasing concern for a cohort of children deserving of far more attention than
they have historically received.
This monograph seeks to add to this growing body of knowledge about donor
children. It does this by examining the existing ethical frameworks and providing
an original analysis of the legal and non-legal regulation of children’s participation
as donors across three Western countries. It combines these doctrinal and theo-
retical approaches with insights into clinical practice gained from the results of
qualitative research conducted with health professionals. It is hoped that clinicians,
families and donors, as well as hospital administrators, policy-makers and law
reformers will find this contribution to the literature to be useful in considering how
best to protect donor children’s interests and respect their rights.
There are many people who I wish to thank who have helped me during the life
of this research. To Emeritus Prof. Terry Carney, many thanks for being such a
great mentor. To Prof. Belinda Bennett, Prof. Judy Cashmore, Prof. Ben Mathews,
Assoc. Prof. Gabrielle Appleby and my colleagues at the Australian Centre for
Health Law Research at Queensland University of Technology, thank you for all
the feedback and support over the years.
Thank you to the participants who took part in my qualitative research. Their
perspectives are incredibly valuable in considering what more we can do for donor
children.
vii
viii Preface
Thank you to my parents-in-law, who have helped in so many ways to make this
possible. And to Leon, Theo and Harry, thank you for your ongoing support and
reminding me every day of the truly important things in life. I dedicate this book to
my parents, who have always fostered and supported my love of learning.
It is always challenging to keep up to date in an area where clinical practice is
developing and regulation is changing. However, I have endeavoured to state the
law as it stands as at 1 January 2018.
Brisbane, Australia Shih-Ning Then

Related Publications
This book incorporates material that the author published in the following journal
articles:
Then, Shih-Ning. 2009. The Legality of Tissue Transplants for the Benefit of
Family Members in the UK and Australia: Implications for Saviour Siblings.
Medical Law International 10:23–64.
Then, Shih-Ning, and Gabrielle Appleby. 2010. Tissue Transplantation from
Children: Difficulties in Navigating State and Federal Systems. University of New
South Wales Law Journal 33:305–336.
Then, Shih-Ning. 2011. Young Children as Regenerative Tissue Donors:
Considering the Need for Legal Reform In Light of Divergent Ethical Approaches.
Journal of Law and Medicine 19:172–195.
Then, Shih-Ning. 2015. Pressure placed on paediatric haematopoietic stem cell
donors: Views from health professionals. Journal of Paediatrics and Child Health
51 (12):1182–1187.
Then, Shih-Ning. 2017. Best Interests: The ‘Best’ Way For Courts to Decide if
Young Children Should Act As Bone Marrow Donors? Medical Law International
17 (1–2):3–42.
Then, Shih-Ning, Ian Kerridge, and Michael Marks. 2018. Children as
Allogeneic Haematopoietic Progenitor (Stem) Cell Donors: ethically challenging
and legally complex. Medical Journal of Australia 208 (8):334–337.
ix
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . .......... . . . . . . . . . 1
Clinical Context . . . . . . . . . . . . . . . . . . . . . . .......... . . . . . . . . . 2
The HSC Transplant Recipient . . . . . . . . . .......... . . . . . . . . . 2
Children as HSC Donors: Interventions and Procedures . . . . . . . . . . 3
Risks and Outcomes for HSC Donors . . . . .......... . . . . . . . . . 5
Frameworks Informing This Monograph . . . . .......... . . . . . . . . . 7
The Relevance of Children’s Rights . . . . . . .......... . . . . . . . . . 8
Regulation and Its Forms . . . . . . . . . . . . . .......... . . . . . . . . . 12
Qualitative Research . . . . . . . . . . . . . . . . . . . .......... . . . . . . . . . 13
Roadmap of the Monograph . . . . . . . . . . . . . .......... . . . . . . . . . 14
References . . . . . . . . . . . . . . . . . . . . . . . . . . .......... . . . . . . . . . 15
2 The Ethics of Children Donating Tissue to Another . . . . . . . . . . . . . 19
Why the Ethical Unease? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Vulnerability of the Donor Child . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Influencing the Discussion: Major Ethical Theories . . . . . . . . . . . . . . . . 25
The Ethics of Paternalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Interests Arising from Family and Intimate Relationships . . . . . . . . . 32
Utilitarian Perspectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Recognising the Emerging Autonomy of the Donor Child . . . . . . . . . 44
The Special Role of Medical Professionals . . . . . . . . . . . . . . . . . . . . . . 53
The Moral Responsibility of Medical Professionals . . . . . . . . . . . . . . 53
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55
3 Ethical Frameworks and Their Influence on Practice . . . . . . . . . . . . 63
The Significance and ‘Status’ of a Child Acting as a Donor . . . . . . . . . 63
Clinical Narratives of Harm—Complexities and Uncertainties . . . . . . . . 66
The Potential for Physical Harm . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
The Potential for Psychological Harm . . . . . . . . . . . . . . . . . . . . . . . 68
xi
xii Contents
The Moral Responsibility of Clinicians—Varied Views

on Donor and Recipient Harms . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
The Absence of the Best Interests Standard . . . . . . . . . . . . . . . . . . . 78
Reflections on Parental Decision-Making . . . . . . . . . . . . . . . . . . . . . . . 79
Donor Children Outside the Spotlight of Attention . . . . . . . . . . . . . . 80
The ‘Journey’ of Parents and Their Assessment of Risk . . . . . . . . . . 82
Parental Pressure on Child Donors and the ‘Expectation’
that Children Will Donate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 84
The Relevance of the Family Unit . . . . . . . . . . . . . . . . . . . . . . . . . . .. 86
The Family Unit and Familial Obligation . . . . . . . . . . . . . . . . . . . .. 86
The ‘Appropriateness’ of Pressure Being Placed on a Child Donor
Within the Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87
Managing the Emerging Autonomy of the Child Donor . . . . . . . . . . . . 89
An Expressed Wish to Donate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
Dealing with a Child’s Objection . . . . . . . . . . . . . . . . . . . . . . . . . . . 90
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
4 Regulation of Child Tissue Donors in the United Kingdom . . . . . . . 99
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
The Role of the HTA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
A Note on Children as Organ Donors . . . . . . . . . . . . . . . . . . . . . . . . . 101
Children as Tissue Donors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
England and Wales . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
Scotland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
The Role of the Courts and Best Interests . . . . . . . . . . . . . . . . . . . . . . 109
The Relevant Test . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
Vulnerable Adult Donor Before the Courts . . . . . . . . . . . . . . . . . . . . 114
Child Participation and Best Interests in the Courts . . . . . . . . . . . . . . . 117
Representation of Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120
Court Use of a Child’s Views . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123
5 Regulation of Child Tissue Donors in Australia . . . . . . . . . . . . . . . . 125
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125
Ethical Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
A Note on Children as Organ Donors . . . . . . . . . . . . . . . . . . . . . . . 129
Children as Blood Donors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
Donation of Regenerative Tissue . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
Potential Liability of Medical Practitioners Under the Human
Tissue Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
Summary of Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141
Contents xiii
Role of the Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141

Issues of Jurisdiction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141
Applying the Best Interests Test . . . . . . . . . . . . . . . . . . . . . . . . . . . 144
Cases Before the Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
Key Factors in Australia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
Influence of International Law and Children’s Rights . . . . . . . . . . . . 152
Child Participation and Best Interests in the Courts . . . . . . . . . . . . . . 155
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
6 Regulation of Child Tissue Donors in the United States . . . . . . . . . . 163
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163
Professional Ethical Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
Policy on HSC Donors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
Guidance on Living Solid-Organ Donors . . . . . . . . . . . . . . . . . . . . . 168
Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
Role of the Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
Court Applications Prior to Removal of Tissue . . . . . . . . . . . . . . . . . 173
Court Applications for Kidney Donation by Children . . . . . . . . . . . . 173
Court Applications for Regenerative Tissue Donation . . . . . . . . . . . . 179
Representation and Participation in the Courts . . . . . . . . . . . . . . . . . 184
Taking into Account the Child’s View . . . . . . . . . . . . . . . . . . . . . . . 186
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 188
7 Medical Professionals’ Views on Legal and Non-legal
Forms of Regulation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
Relationship Between Law and ‘Ethical Practice’ . . . . . . . . . . . . . . . . . 192
Law and Ethics as Essential Components or Separate Issues . . . . . . . 192
The Benefits of the Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193
Using Law to Resolve Disputes and Difficult Situations . . . . . . . . . . 194
Assisting Others to Focus on the Donor . . . . . . . . . . . . . . . . . . . . . . 195
Benefits Dependent on Knowledge . . . . . . . . . . . . . . . . . . . . . . . . . 196
Negative Views About the Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197
Law Viewed as Inflexible, Unnecessary, or Out of Date . . . . . . . . . . 197
Wishing to Avoid Engaging with the Law . . . . . . . . . . . . . . . . . . . . 198
Alternatives to Engaging with the Law . . . . . . . . . . . . . . . . . . . . . . 199
Clinicians’ Views Regarding Legal Reform . . . . . . . . . . . . . . . . . . . . . 200
Best Practice: International Guidelines, Policies and Standards . . . . . . . 200
World Medical Association (WMA) and
World Health Organization (WHO) . . . . . . . . . . . . . . . . . . . . . . . . . 201
World Marrow Donor Association (WMDA) . . . . . . . . . . . . . . . . . . 202
Worldwide Network for Blood and Marrow Transplantation
Association (WNBMT) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203
xiv Contents
International Accreditation Standards—FACT-JACIE Standards . . . . 204

Overview of Guidelines, Policies and Standards . . . . . . . . . . . . . . . . . . 207
Medical Professionals’ Views Regarding Key Recommendations
in Guidelines, Policies and Standards . . . . . . . . . . . . . . . . . . . . . . . . . . 207
Interactions with the Donor Child . . . . . . . . . . . . . . . . . . . . . . . . . . 207
Support for the Requirement for Independent
Medical Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 209
Support for and Recognition of the Value of a ‘Process’
Focusing on the Donor Child . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213
Medical Professionals’ Views of the Role of Guidelines,
Policies and Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214
Accreditation Standards as Drivers in Practice . . . . . . . . . . . . . . . . . . . 217
Influence of Accreditation Standards . . . . . . . . . . . . . . . . . . . . . . . . 217
Accreditation Standards Sufficient as Regulation? . . . . . . . . . . . . . . . 219
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220
8 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223
Some Proposals to Refocus Attention on Donor Children . . . . . . . . . . . 223
Regulating Donation: Recognising the Value of Donor Focused
Processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 224
Separate Medical Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . 226
Donor Child Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227
Mechanisms to Ensure the Child’s Voice Is Heard . . . . . . . . . . . . . . 228
What the Law Should Require in Relation to Child Donors . . . . . . . . . 229
Cognitively Disabled Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229
Mature Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 230
Immature Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231
Access to, and Issues in, the Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . 232
Applying the Best Interests Test . . . . . . . . . . . . . . . . . . . . . . . . . . . 233
Concluding Comments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 239
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 239
Appendix: Qualitative Study Methodology and Analysis . . . . . . . . . . . . . 243
Abbreviations
AAP American Academy of Pediatrics

GCSF Granulocyte colony-stimulating factor
HSC Haematopoietic stem cell
HTA Human Tissue Authority
NHMRC National Health and Medical Research Council
PBSC Peripheral blood stem cell
WHO World Health Organization
WMDA World Marrow Donor Association
WNBMT Worldwide Network for Blood and Marrow Transplantation
Association
xv
Chapter 1
Introduction
Every year, thousands of children around the world donate tissue to a family member
in an attempt to cure or treat that other person. Children proposed as donors will
almost always act as haematopoietic stem cell (HSC) donors—sourced from bone
marrow or peripheral blood—and in rare cases may donate an organ such as a kidney.
The great good that can come about through their participation is at the cost of
donor children undergoing physically invasive and unnecessary medical procedures.
The non-therapeutic element of their involvement brings about questions of what is
ethically acceptable and how should children’s involvement be regulated?
A book focusing on the topic of child donors, in particular HSC donors, also seems
timely. With the increase in potential uses and indications for HSC transplant, more
children are likely to be asked to act as donors.1 Recent years have brought about
the emergence of what seems to be more concern for child donors, demonstrated by
a growing body of medical and ethical literature examining effects on children who
donate, and repeated calls for research to improve the paediatric donor experience.2
Mirroring this to some extent has been the growth in professional ethical guidelines
available to clinicians who deal with child donors.3
In light of this increasing focus on the clinical experience and outcomes for
child donors, this book considers another dimension—the regulatory frameworks
at play—as well as addressing ethical issues and examining the perspectives of clin-
icians regarding the role of such regulation. In doing so this book draws upon ethi-
cal discourse, legal and non-legal forms of regulation and the results of qualitative
research to provide a window into the complexities of the situation where a child is
asked to act as a HSC donor for the benefit of another.
1 Grilley (2016), 1.
2 See, for example, Bauk et al. (2013), Pentz et al. (2014), Pelletier et al. (2015), Switzer et al.
(2016).
3 See, for example, Committee on Bioethics (2010), Bitan et al. (2016), van Walraven et al. (2010).
© Springer Nature Singapore Pte Ltd. 2018 1

S.-N. Then, Children as Tissue Donors,
https://doi.org/10.1007/978-981-13-3047-6_1
2 1 Introduction
Clinical Context
Before considering the relevant ethical and regulatory issues, it is necessary to briefly
outline the clinical context and current knowledge about paediatric HSC donors. It
should be noted that while there is some discussion of children acting as organ donors
in this book—and it is recognised that the risk profile for children acting as kidney
or liver lobe donors is considerably higher4 —the primary focus of this book is on
the more common situation of a child acting as a HSC donor.
In order for a child to be called upon to act as a tissue donor, their sick sibling
or (less commonly) another sick family member, may suffer from one of a range
of malignant or non-malignant diseases. These include lymphoblastic leukaemia,
myeloid leukaemias, myelodysplastic syndrome, multiple myeloma and severe aplas-
tic anaemia.5 Depending on the disease suffered, HSC transplant may be recom-
mended quickly following diagnosis, or only when other treatment has failed.
Healthy tissue-matched HSC is located in the bone marrow or peripheral blood
stem cells (PBSC) of the donor and provides the source of the potential cure for these
conditions. Healthy siblings are the most likely source of suitable tissue as they have
a 25% chance of immunologically compatibility—that is, being tissue-matched. It
is, however, possible to source matched tissue from elsewhere. Unrelated donations
of bone marrow or cord blood can be sourced from the international network of bone
marrow donor registries (which currently has over 31 million bone marrow donors
or cord blood units registered6 ), and haploidentical transplants are becoming more
prevalent.7 However, where a related donor is available, usually alternatives will not
be sought.8
How often will children be called upon to donate? More than one third of children
who receive a HSC transplant, will receive it from a sibling who is also a child.9
This equates to thousands of children acting as HSC donors globally on an annual
basis.10
The HSC Transplant Recipient
The recipient will usually be a sibling of the donor, and will often also be a child.
In rare cases, the proposed recipient may be a parent, cousin or aunt or uncle. The
process of donation and how the recipient reacts to the transplant are relevant to the
psycho-social impact of donation on a child donor and is briefly described here.
4 Van Asche et al. (2016), 59–60.

5 Bendorf and Kerridge (2011), 615.
6 World Marrow Donor Association (2017).
7 Moore et al. (2009), 123, Passweg et al. (2017), Chan and Tipoe (2013), 4.
8 Grupp et al. (2006), 415, Bitan et al. (2016), 97, Kisch et al. (2014), 437, Then et al. (2018).
9 Bitan et al. (2016), 97, Passweg et al. (2014), 748, Styczynski et al. (2012).
10 For numbers of child donors in Europe see Passweg et al. (2014), 748, Styczynski et al. (2012),
2935. For specific national numbers, refer to Chaps. 4–6.

Clinical Context 3
In the week prior to receiving a transplant, recipients will receive conditioning

treatment to kill off their existing bone marrow. Following conditioning, if a recipient
is not given a new source of cells relatively quickly via transplant, the consequences
are fatal.
Generally, the overall survival rates for recipients of bone marrow is quite high
(approximately 80%),11 but the chance of cure in individual cases will differ.12 Even
where a recipient lives following transplant, they can suffer significant complications
or experience chronic medical conditions for the rest of their lives.
In the immediate post-transplant phase, a recipient is kept in isolation for a period
of weeks and would not have physical contact with the donor. During this time the
risk of the recipient suffering severe graft versus host disease is the main concern.
As described by Bendorf and Kerridge, in its worst form, severe acute graft versus
host disease can result in a recipient, ‘losing her/his entire skin surface, experiencing
continuous abdominal pain and nausea and passing litres of diarrhea each day’.13
In the long-term, the majority of recipients will experience immunodeficiency and
renal dysfunction.14 The list of medical issues experienced by a minority of recipients
is extensive, including chronic graft versus host disease, cataracts, endocrine dysfunc-
tion, infertility, delayed sexual development, oral and dental problems, psycho-social
stress, secondary malignant neoplasms, cognitive disorders, avascular necrosis and
respiratory dysfunction.15
Despite the burden of these long-term effects, studies show that recipients tend to
experience a good quality of life—with some reporting comparable or better health-
related quality of life than population norms up to eight years following transplant.16
Children as HSC Donors: Interventions and Procedures
A child donor can undergo a number of procedures in order to donate HSC for trans-
plantation. Children will have to undergo tests to determine if they are tissue matched
and if they are suitable to act as a donor. If compatible, they may undergo a bone
marrow harvest (with or without the administration of a growth factor to stimulate
cell production) to obtain the necessary volume of cells. Alternatively, and generally
less likely, is that children may undergo a process known as aphaeresis. Following
both these procedures, the cells taken from the child are naturally regenerated in the
body.
11 Bendorf and Kerridge (2011), 615, Then et al. (2018), 334.

12 For example, Greenberg et al. (2014), at 246, state that in favorable circumstances the success
rate is 50–70%, whereas in less favourable circumstances the rate is 10–25%.
13 Bendorf and Kerridge (2011), 617. See also Mohty and Mohty (2011), Table 1.
15 Bendorf and Kerridge (2011), 616. For a comprehensive review, see Baker et al. (2010).
16 See Baker et al. (2010), 334. Although the authors note that given the short-term nature of follow
up studies of transplant recipients in these studies, ‘more morbidity and mortality from late effects
may be seen in the near future’.
4 1 Introduction
Tissue-typing and suitability as a donor: In order to determine compatibility,

potential donors must provide blood to be tested. While this preceding step is seen
to be minimally invasive and, in practice, tends to be treated as separate to a tissue
donation, it is recognised that testing for tissue compatibility raises the same ethi-
cal issues as removal of tissue for donation, albeit with a much lower risk profile.
Like the removal of HSC tissue, this step is also considered to be a non-therapeutic
intervention for the benefit of another. However, both in practice, and implicitly in
most legal cases, this medical intervention has been accepted as occurring prior to
the decision regarding donation. There have, however, been calls for this process
to be re-examined, with it being recognised that the outcome of preliminary testing
has major implications for child donors.17 Where a child is tissue-matched, a pre-
donation evaluation is conducted to assess suitability to act as a donor. This includes
medical assessment for conditions which may preclude them acting as a donor and
answering (where the child is old enough) ‘sensitive and confidential questions’
related to sexual practices and drug use.18
Bone marrow harvest: Cells obtained by bone marrow harvest remains the most
common source of cells for transplant.19 A bone marrow harvest conducted on a
child donor usually takes place under general anaesthetic and involves the repeated
insertion of large bore needles into both sides of the hip bones (iliac crests) around
50–300 times.20 Where a donor child is significantly smaller than the recipient, the
child may be given granulocyte colony-stimulating factor (G-CSF) prior to harvest
to stimulate cell production.
Aphaeresis: The process of aphaeresis to obtain PBSC for transplantation has
historically been less common. Use of PBSC was found to be associated with poorer
outcomes and increased mortality for recipients and, as such, was not favoured for a
period of time.21 However, the evidence base is changing in this regard and it therefore
remains relevant, particularly in relation to older children. Generally, donors are
injected with cell stimulating G-CSF in the days leading up to the procedure.22 The
process of aphaeresis involves the donor having venous catheters put in place (usually
in their arms) and blood is taken from their body, passed through a machine—to
separate the relevant cells—and returned to the body via another catheter. In most
children under 12 years of age, a central line (i.e. central vascular access) will likely
be required, which is placed under general anaesthetic.23 In some circumstances,
children may also undergo aphaeresis to obtain lymphocytes for transplantation.
This same procedure is used but no G-CSF needs to be administered prior to the
procedure.
17 Then (2015), 1185–1186, Pentz et al. (2014), e1161–2.

18 Wiener et al. (2007), 47.
19 Styczynski et al. (2012), 2935.
20 Pulsipher et al. (2006), 423, Karakukcu and Unal (2015), 18.
21 Pulsipher et al. (2006), 422, Eapen et al. (2004), Bitan et al. (2016), 98.
22 Karakukcu and Unal (2015), 19.
23 Committee on Bioethics (2010), 394, Karakukcu and Unal (2015), 19.
Clinical Context 5
Risks and Outcomes for HSC Donors
Child donors as a group, have not historically always been subject to processes that
safeguard their physical or psychological interests. Research has shown harvested
volumes of tissue often exceeded current recommended amounts; donors were often
not assessed or treated by independent medical professionals; and physical and psy-
chological follow up for donors has been poor.24 In recent years, increasing concern
over the interests and risks to child donors has manifested in more published research
devoted to this traditionally overlooked group of children. The majority of this work
has been led by clinicians and associated health care professionals and, while this
section does not purport to provide an in depth review of our existing knowledge
about child donors, reference is made to some of these studies.
In terms of known physical risks, the major risk associated with donation comes
with the need for children to undergo general anaesthetic. Complications of anaes-
thesia involve vomiting, sore throat, decreased blood pressure and abnormal heart
rate.25 However, other serious complications including nerve, bone or tissue injury
can occur.26
Infection at the site of the harvest can result and other common short-term effects
include fatigue, low back pain, headaches, nausea, difficulty walking, problems sleep-
ing and bleeding problems.27 Pain at the harvest site is usually experienced for a day,
although can last for up to five days in some children.28 Rarely, long-term chronic
pain at the harvest site has been reported. Some children may become anaemic and
in some cases a blood transfusion may be needed.29 Sometimes iron supplements
may be given to donor children.30 Usually children donating bone marrow will stay
in hospital for one day.
Children who undergo aphaeresis are also in danger of suffering from a range of
adverse physical outcomes. Where a general anaesthetic is needed to place a central
line, the same risks associated with undergoing a general anaesthetic (described
above) apply to those children. Complications can arise from the central venous
catheter and pain is often experienced at the site of the line.31 Some donors experience
low calcium levels (hypocalcemia) during aphaeresis. The main risks associated with
aphaeresis relate to the need to use G-CSF to increase the level of cells in the donor’s
body prior to the procedure.
Cell stimulating G-CSF is usually administered prior to aphaeresis to collect
PBSC and is sometimes used prior to bone marrow harvests where the donor is
much smaller than the recipient. The use of this is, however, associated with certain
24 O’Donnell et al. (2010), van Walraven et al. (2013), 44.

26 Committee on Bioethics (2010), 394.
27 Committee on Bioethics (2010), 394, Then et al. (2018), 334.
29 Styczynski et al. (2012), 2937–8, Committee on Bioethics (2010), 394.
31 Styczynski et al. (2012), 2939, Committee on Bioethics (2010), 394, Then et al. (2018), 334.
6 1 Introduction
adverse outcomes and some uncertainty exists as to long-term effects on healthy

children.
G-CSF is administered via injections daily in the four or five days preceding
aphaeresis. These injections can cause muscle or bone pain, headaches, abdominal
or back pain, fatigue, light-headedness, uveitis, sleeping problems and difficulty
walking.32 Severe adverse events such as splenic rupture have been reported in adults,
but not children.33
The main issue associated with use of G-CSF is the unknown long-term impact
it may have on children.34 As described by the American Academy of Pediatrics
(AAP):
Although most G-CSF effects are thought to be transient and self-limited, preliminary data
suggest that G-CSF affects not only myeloid cells but also chromosomal integrity and gene
expression. There is also the theoretic risk of potentially increasing the long-term risk of
leukemia, but to date, no clinical data support this concern.35
While the existing evidence suggests this may not be an issue of concern,36 unsur-
prisingly, there has been a call for more research on the long-term effects of G-CSF
in healthy donors.37
A further issue worthy of attention is that research shows that some risks materi-
alise more in younger, smaller donors than in other children. For example, the risks
of cardiovascular complications and anaemia from bone marrow harvest were found
to be highest in smaller children where the donor-recipient weight difference was
greatest.38 Smaller donors are also more likely to need to undergo blood transfusions
and be subject to multiple harvests.39 Data from Europe shows that over a four year
period ending in 2009, 453 children acted as regenerative tissue donors across 38
hospitals.40 Of those, 58 children were less than four years old with the youngest
being 0.7 years old. Literature is also available which shows that, at least in the
United States in 1996, the vast majority of transplant centres would be willing to
harvest from a child less than six months old.41
The evidence base regarding psychological outcomes for child donors is grow-
ing, but remains limited.42 Small scale studies have shown that former child donors
reported a wish to have more information, more emotional support and a greater
32 Styczynski et al. (2012), 2939, Committee on Bioethics (2010), 394, Then et al. (2018), 334.
36 Karakukcu and Unal (2015), 20.
37 Pentz (2006), Styczynski et al. (2012), 2941.
39 Styczynski et al. (2012), 2937, 2939. See also Pulsipher (2012), Pereira et al. (2017).
41 Chan et al. (1996), 645–6.
42 See, for example, Wiener et al. (2007), Bauk et al. (2013). See also recent studies analyzing
different aspects of the child donor experience: van Walraven et al. (2013), D’Auria et al. (2015),
Hutt et al. (2015), Elfer (2017).
Clinical Context 7
role in decision-making.43 Such findings would be consistent with what adult donors
experience.44 Some child donors have reported feelings of being pressured or coerced
into acting without any choice,45 whereas other studies found donors considered there
was ‘no decision’ to be made, such was their immediate reaction to knowing they
could act as a donor.46
One larger study found that approximately 20% of paediatric donors scored poorly
on a health-related quality of life measurement, both before and up to one year fol-
lowing donation.47 That study found that younger children (between five and seven
years) were the most vulnerable. Studies have also shown parents overestimating
their donor child’s health-related quality of life and not appreciating the complex
emotional responses experienced by donors.48 Some have suggested that psycholog-
ical support for child donors both in the immediate and long term is required.49
Many of these studies have limitations, for example, limited sample size and
exclusion of donors where the recipient has passed away. While most of these studies
pose more questions than answers, some of these reported issues point the way to
improvements in processes for donor children that are discussed in this book.
Repeated calls have been made for further research in this area in an attempt to
advance the evidence base for designing more appropriate interventions for donors
and their families.50 This book adds to these calls by shedding light on clinical
perspectives and the role of regulation. It is suggested that consideration of more
appropriate regulation is another way to safeguard the interests of donor children.
Frameworks Informing This Monograph
A number of intersecting principles and perspectives guide the discussion in this

book. The concepts of ‘best interests’ and ‘rights to participation’ of children have
equivalents in the legal and ethical spheres and are key to the discussion that takes
place throughout this book. Underpinning the importance of these concepts is the
recognition that children are bearers of certain rights. The approach of this book
is to accept that children are both morally entitled and legally recognised (through
international law) as being rights holders. This perspective shapes the discussion of
how children who are proposed as or who act as donors should be treated.
43 Bauk et al. (2013), 241, D’Auria et al. (2015), 452.

44 Garcia et al. (2013).
45 See Garcia et al. (2013), 1048, Then (2015).
46 Pentz et al. (2014), e1159–60.
47 Switzer et al. (2016), 169.
48 Switzer et al. (2017), 2–3, Hutt et al. (2015), 1341.
49 Switzer et al. (2016), 170, Hutt et al. (2015), 1341, Pelletier et al. (2015), 738.
50 See, for example, Hutt et al. (2015), Bauk et al. (2013), Garcia et al. (2013), Pentz et al. (2014),
Pelletier et al. (2015), D’Auria et al. (2015), Weaver et al. (2015), Switzer et al. (2016), Switzer
et al. (2017), Derrington and Essner (2016).
8 1 Introduction
The Relevance of Children’s Rights
When looking at the child donor, the rights of such a child must be considered.
While philosophers have argued about the nature of rights and whether children can
be genuine rights holders, this book takes the view that children can, and do, possess
rights.51
The rights discussed in this book are a subset of human rights—i.e. human rights
attributable to children. In discussing these rights, it is recognised that while these
rights may be protected by law, this is not the only way that rights can be recognized
and respected.52 Sometimes non-legal means of regulation can be more effective at
respecting rights, and this is certainly arguably in the clinical ethical setting. This
accords with Sen’s view:
Human rights can be seen as primarily ethical demands. They are not principally ‘legal’…
commands. Even though human rights can, and often do, inspire legislation, this is a further
fact, rather than a constitutive characteristic of human rights.53
In terms of decision-making for children, the main theoretical divide has been
between a paternalistic welfarist perspective versus a children’s rights perspective.
However, as noted by Choudhry and Herring, ‘in many cases a welfare and rights
perspective will produce the same result’.54 Rather what distinguishes the approaches
is the view of who should be the primary decision-maker and the level of participation
of a child in the decision-making process.55 The welfarist is likely to accept that
parents and/or the court is always the proper decision-maker for a child. This view
is rejected by a children’s right advocate who will look to the child him or herself,
when competent, or the most appropriate surrogate decision-maker when they are
not, but recognizing that even non-competent children have a right to participate.
This book accepts that a children’s rights perspective should guide regulation and
action in this context.
At an international level the United Nations Convention on the Rights of the Child
(‘Convention’) provides an authoritative statement of what these rights include and
member States’ obligations towards children.56 Having achieved nearly universal
ratification by member states (with the notable exception of the United States), it
is arguable that some of the articulated rights are on their way to being accepted as
having the status of customary international law. The influence of the Convention at
national levels is discussed in later chapters.
In relation to children who are proposed as and who act as tissue donors there are
a range of potentially relevant rights that could be discussed in this context—e.g. the
51 Fordiscussion of children’s rights generally see, Eekelaar (1986, 1992), Freeman (1992), Fortin
(2009).
52 Choudhry and Herring (2010), 99.
53 Sen (2004), 319.
56 United Nations (1989).
Frameworks Informing This Monograph 9
right to protection from harm (art 19), and the right to privacy and noninterference
with family (art 16). While it is accepted that these rights may be relevant, the
focus of this book is on the two rights that correspond with articles 3 and 12 of
the Convention, namely, the right for a child to have his or her best interests taken
as a primary consideration (art 3) and the right of the child to be heard (art 12).
These rights constitute two of the four ‘general principles’ of the Convention that
establish rights in of themselves, but are also considered in the interpretation and
implementation of all other rights.57
Best Interests
Best interests is a concept with foundations in both ethical discourse and legal princi-
ple. The existence of a best interests standard to guide decision-making on behalf of
those considered vulnerable in our societies predates the existence of the Convention.
In the Convention itself, article 3(1) relevantly states:
In all actions concerning children, whether undertaken by public or private social welfare
institutions, courts of law, administrative authorities or legislative bodies, the best interests
of the child shall be a primary consideration.
The content that needs to be assessed in applying this standard, that by its very
nature is paternalistic, is likely to differ for each child and each decision that needs
to be made. As discussed in Chap. 2, while the standard can be viewed positively
as ‘flexible and adaptable’58 it equally suffers from criticisms of being vague and
unpredictable.59
Despite the criticisms, the best interests standard remains the mainstream ethi-
cal and legal justification for medical decision-making on behalf of children. It is
accepted that this standard remains relevant and is an appropriate legal standard for
courts within a children’s rights framework.60 How this plays out in practice, and how
the courts apply this standard in child donation cases is explored further in this book.
In Chap. 2 the ethical basis of best interests is discussed, Chaps. 4–6 discusses how
the best interests legal standard has been utilized in the United Kingdom, Australia
and the United States and Chap. 3 gives an insight into how health professionals
view it in the context of caring for donor children.
The Right of a Child to Participate
When we talk of a child’s right to participation as a donor we are, of course, referring

to more than just the act of them providing tissue for another. Participation in this
57 United Nations Committee on the Rights of the Child (2009), 3.

58 United Nations Committee on the Rights of the Child (2013), 9.
59 See Section “Criticism and Problems in the Context of Tissue Donation” in Chap. 2 The Ethics
of Children Donating Tissue to Another.

60 Then (2017).
10 1 Introduction
respect refers to not only a child’s right to be informed, voice views, and be listened
to, but also arguably extends—in some cases—to making the actual decision to act
as a donor. The way this is expressed in article 12 of the Convention is:
1. States Parties shall assure to the child who is capable of forming his or her own views the
right to express those views freely in all matters affecting the child, the views of the child
being given due weight in accordance with the age and maturity of the child.
2. For this purpose, the child shall in particular be provided the opportunity to be heard in
any judicial and administrative proceedings affecting the child, either directly, or through a
representative or an appropriate body, in a manner consistent with the procedural rules of
national law.61
Participation takes numerous forms depending on the age, understanding and

communication abilities of the child in question. It is clear that varying levels of
cognitive development amongst children as they grow from infants to young adults
mean that the extent to which they participate, and what participation means, will dif-
fer. For younger children, respect for their rights to participation in decision-making
may take the form of provision of age appropriate information and seeking their
views and providing appropriate ways for them to convey their views, and explain-
ing reasons for decisions. Fortin rightly suggests that, ‘[m]aking choices requires
very different skills and maturity from those required for taking part in a consul-
tation process’.62 As children mature, more and more attention should be given to
their views in the decision-making process—a point clearly made in article 12(1).63
Of course, at some point, when a child achieves sufficient maturity to be considered
competent, decision-making autonomy—with supports, if necessary (in the form of
appropriate information, the opportunity to have questions answered, time to con-
sider the options, the opportunity to speak to relevant people, etc.)—should be passed
to the child. This is consistent with interpretations of the Convention allowing mature
child to independently provide consent to medical interventions.64
For a proposed child donor, participation by that child is necessary at multiple
stages. In the medical arena, there are clinical appointments to attend and medical
decisions to be made. While good medical practice guidelines suggest that all chil-
dren should participate in medical decision-making processes to an age appropriate
level, in practice including in the donation context, this may not always occur.65
In some cases, judicial guidance is sought and children can become the subject of
court applications about whether they ought to donate.66 In this context, while laws
can direct that courts should take into account a child’s views in making a decision,
the extent that such directions are followed depends, in part, on whether a child
61 The Committee notes that the implementation of article 12 has been broadly conceptualised as
‘participation’, despite the absence of the term in article 12 itself: United Nations Committee on
the Rights of the Child (2009), 3.
62 Fortin (2009), 299.
63 United Nations Committee on the Rights of the Child (2009), 8–9.
64 Tobin (2012), 147.
65 Stegenga et al. (2018), Kilkelly and Donnelly (2011), Donnelly and Kilkelly (2011).
66 United Nations Committee on the Rights of the Child (2009), 9–10.
Frameworks Informing This Monograph 11
has effective ways of conveying their views to relevant parties. This can be particu-
larly problematic in the court setting.67 How children of varying ages and cognitive
capacities are given the opportunity to participate in these vastly different arenas of
medicine and law is discussed in more detail in Chaps. 4–6.
The Interrelationship Between Best Interests and Participation
While there has sometimes been a dichotomous approach to use of the welfarist best
interests approach as compared with a ‘rights-based approach’, these two perspec-
tives can, and do, exist under the Convention framework. Snelling’s suggestion that
‘rights-based reasoning should inform a best-interest analysis’68 is largely consistent
with how the Committee has interpreted the interaction of the right to express a view
and participate under article 12 and the operation of the best interest standard in
article 3.69
The Committee States:
There is no tension between articles 3 and 12, only a complementary role of the two general
principles: one establishes the objective of achieving the best interest of the child and the
other provides the methodology for reaching the goal of hearing… the child… In fact, there
can be no correct application of article 3 if the components of article 12 are not respected.
Likewise, article 3 reinforces the functionality of article 12, facilitating the essential role of
children in all decisions affecting their lives.70
In considering the work of these rights for children as tissue donors, Brennan’s
views—of a gradualist approach to viewing children’s rights—is adopted. She sug-
gests that: ‘children move gradually from having their rights primarily protect their
interests to having their rights primarily protect their choices … reflect[ing] the
transition of the child from being a creature whose interests are of moral concern,
and hence deserve the protection of rights, to being a creature who can choose for
herself’.71
This approach proposes that children’s rights initially function to ‘protect their
interests’ when they are very young, but as they mature and develop into autonomous
individuals, rights eventually act to ensure their choices are respected.72 Where chil-
dren are severely cognitively impaired with no change in cognitive capacity over time,
rights are still rightfully attributed to them—but they continue to work to primarily
protect their interests.
67 Fortin(2009), 291.
68 Snelling(2016), 51.
69 United Nations Committee on the Rights of the Child (2009), United Nations Committee on the
Rights of the Child (2013).

70 United Nations Committee on the Rights of the Child (2009), 15–16. See also United Nations
Committee on the Rights of the Child (2013), 11, 13.

71 Brennan (2002), 62.
72 Brennan (2002).
12 1 Introduction
Using a gradualist view of children’s rights in which the focus moves from protec-
tion to respect for a child depending on their development and maturity is consistent
with the approach in this book.
Regulation and Its Forms
This work adopts a de-centred view of law as one of a variety of forms of potentially
effective regulation. While the law has traditionally been considered as the tool of
regulation set by the State, it is not the only instrument that can influence or guide
an area of practice.73 Indeed, as recognised by Heimer:
Although law is a very special kind of normative system, it nevertheless must co-exist
with other normative systems. These overlapping normative systems sometimes support or
reinforce each other but at other times are in fierce competition.74
Implicit in adopting this approach is an acceptance that the traditional ‘command-

control’ or ‘deterrent’ model of regulation—that uses sanctions to deter people from
unwanted conduct—is unlikely to be sufficient.75 Legal measures such as these set
minimum standards rather than aspirational best practice standards, which may be
provided by other means (i.e. standards, policies or professional guidelines).76 Par-
ticularly, in the medical context, other studies have shown that use of the ‘command-
control’ model does not necessarily bring about the desired results.77 It is recognised
that ‘legal rules, may fail to shape social practices’.78
This book generally differentiates between ‘legal’ and ‘non-legal’ forms of regu-
lation. These terms fit broadly with the categorisations of ‘rules’ as compared with
‘standards’, as Black explains:
Rules are usually seen as relatively precise formulations: ‘a legal precept attaching a definite
legal consequences to a definite detailed state of fact’. Standards are seen as less precise,
requiring some judgement in their application.79
This explanation fits well with how the law and non-legal standards—in the form
of professional guidelines, policies and standards—are generally viewed.
In this area, regulation of children acting as donors is composed of domestic and
international law, international standards and domestic professional guidelines.
One of the concerns of this book is whether donor children are treated appro-
priately—in being given appropriate protections and respect through regulatory
schemes—and whether a new regulatory response is needed to ensure this.
73 Black (2002).
74 Heimer (2010), 179.
75 Parker and Braithwaite (2003), 130–131.
76 See generally Parker and Braithwaite (2003), 123.
77 See, for example, Magnusson (2002).
78 See generally Parker and Braithwaite (2003), 127.
79 Black (1997), 20.
Qualitative Research 13
Qualitative Research
Chapters 3 and 7 incorporate the results of a qualitative study that was conducted with
health care professionals in Australia. For an overview of the research methodology
adopted, see Appendix A. The rationale for including these results is that it allows
the theory of law and medical ethics to be compared against the ‘reality’ of medical
practice as described by those clinicians.
The approach to this research can be characterised as being from the perspective
of a ‘critical realist’—as the term is described by Maxwell.80 The main features of
such a stance are that:
• ontologically, it is accepted that ‘there is a real world that exists independently of
our perceptions, theories, and constructions’;
• epistemologically, it is recognised that ‘our understanding of the world is
inevitably a construction from our own perspectives and standpoint’; and
• there is ‘no possibility of attaining a single, “correct” understanding of the world’.81
This research will only be able to access and investigate a small part of the ‘real-
ity’ of child donation. Indeed in doing so, a researcher’s own history and values
inevitably shape the outputs of such research. The nature of social research is that
many influences are present and not all are able to be identified through any method
of research. In attempting to access and present knowledge about the topic of child
donors, qualitative methods have been used to provide a ‘thick description’82 of the
views of health professionals on the topics of ethics, regulation and medical practice
relating to child donors. Qualitative interviewing as the main tool of data collection
was used as it is accepted that people’s ‘knowledge, views, understandings, interpre-
tations, experiences and interactions are meaningful properties of the social reality’
worth investigating.83
The qualitative work focuses on ‘how social phenomena and processes operate
or are constituted’.84 While this work attempts to elucidate and explain, to a lim-
ited extent, how and why certain things happen in the context of child donors, these
explanations are not based on the idea that certain variables have a cause-effect rela-
tionship to outcomes.85 This research does not purport to provide definitive answers,
solutions or theories to ‘explain’ the views of health care professionals. Instead it
offers an insight into their perspectives and seeks to offer some limited explanation
80 Maxwell (2012), 3–5. See also generally the description of postpositivist in Lincoln et al. (2011),
98–115.
81 Maxwell (2012), 5.
82 See Ponterotto (2006), 543: ‘Thick description describes observed social actions and assigns
purpose and intentionality to these actions, by way of the researcher’s understanding and clear
description of the context under which the social actions took place. Thick description captures
the thoughts and feelings of participants as well as the often complex web of relationships among
them.’
83 Mason (2002), 63. See also Patton (2002), 21, Kvale (2007), 10–12.
84 Mason (2002), 175.
85 Mason (2002), 175.
14 1 Introduction
as to why certain things tend to occur, or not occur, in medical practice.86 The aim is
to ‘understand the processes, meanings, and local contextual influences involved’ in
relation to child donation.87 The findings presented here must, therefore, be viewed
against this understanding.
Socio-legal research such as this adds much to a mere doctrinal critique, helping to
elucidate the real, lived complexity of the issue and the significance (or lack thereof)
of the regulatory frameworks to those who are pivotal in clinical practice.
Roadmap of the Monograph
In Chap. 2, the ethical theories and principles that underpin the arguments for and
against children acting as tissue donors are discussed. This provides the ethical
foundation for the remainder of the book.
Chapter 3 uses the results of qualitative research to assess whether the ethical
frameworks discussed in Chap. 2 have influenced clinical practice. As discussed
there, the ethical literature often fails to account for the rich complexity and variety
of viewpoints present at the clinical level.
In Chaps. 4–6 the regulation of children acting as tissue donors through legal
and non-legal domestic regulation is examined. The differing regulatory positions in
the United Kingdom (Chap. 4), Australia (Chap. 5) and the United States (Chap. 6)
are discussed. Regulation in these countries is complicated with there often being
an interplay between legal regulation—in the form of legislated schemes and court
cases—and professional ethical guidance. International law also plays a role, with
countries adopting different positions regarding children’s rights to participation in
medical and judicial decision-making. What we see from these chapters is that often
the law governing when a child can act as a donor is complex and unsatisfactory.
Chapter 7 examines the views of clinicians in relation to the role of law and other
form of non-legal regulation. It also discusses a number of international standards
and guidelines that exist separate from the national professional guidelines discussed
in Chaps. 4–6.
Chapter 8 provides a recapitulation of the main findings and considers what can
be done to improve current regulation for the benefit of child donors.
Ultimately, it is argued that the interests of child donors have been forgotten for
too long. Donor children are deserving of attention and, in treating them with respect,
their voices ought to be heard before, during and after the act of donation occurs.
86 In this respect, some ‘causal processes’ (as that term is used by in Maxwell (2012), 35–8) will be
identified in this book from analysis of the fieldwork data. See also Mason (2002), 175.
87 Maxwell (2012), 94.
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Children as Tissue Donors Regulatory

Protection Medical Ethics and Practice

Chinese Dream and Practice in Zhejiang Politics Ning

The child protection practice manual : training

Utopia in Practice: Bishan Project and Rural

Tissue optics light scattering methods and instruments

Medical Law and Ethics 6th Edition Jonathan Herring

Medical Ethics and the Elderly 3rd Edition Rai

Security Supervision and Management Theory and Practice

Health protection principles and practice 1st Edition

Children as Tissue Donors

ISBN 978-981-13-3046-9 ISBN 978-981-13-3047-6 (eBook)

Library of Congress Control Number: 2018958938

© Springer Nature Singapore Pte Ltd. 2018

Brisbane, Australia Shih-Ning Then

The Moral Responsibility of Clinicians—Varied Views

Role of the Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141

International Accreditation Standards—FACT-JACIE Standards . . . . 204

AAP American Academy of Pediatrics

© Springer Nature Singapore Pte Ltd. 2018 1

The HSC Transplant Recipient

4 Van Asche et al. (2016), 59–60.

2935. For specific national numbers, refer to Chaps. 4–6.

In the week prior to receiving a transplant, recipients will receive conditioning

Children as HSC Donors: Interventions and Procedures

11 Bendorf and Kerridge (2011), 615, Then et al. (2018), 334.

Tissue-typing and suitability as a donor: In order to determine compatibility,

17 Then (2015), 1185–1186, Pentz et al. (2014), e1161–2.

Risks and Outcomes for HSC Donors

24 O’Donnell et al. (2010), van Walraven et al. (2013), 44.

adverse outcomes and some uncertainty exists as to long-term effects on healthy

Frameworks Informing This Monograph

A number of intersecting principles and perspectives guide the discussion in this

43 Bauk et al. (2013), 241, D’Auria et al. (2015), 452.

The Relevance of Children’s Rights

The Right of a Child to Participate

When we talk of a child’s right to participation as a donor we are, of course, referring

57 United Nations Committee on the Rights of the Child (2009), 3.

of Children Donating Tissue to Another.

Participation takes numerous forms depending on the age, understanding and

The Interrelationship Between Best Interests and Participation

Rights of the Child (2013).

Committee on the Rights of the Child (2013), 11, 13.

Regulation and Its Forms

Implicit in adopting this approach is an acceptance that the traditional ‘command-

Roadmap of the Monograph

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