Saviour Siblings and the Regulation of Assisted Reproductive Technology

Harm, Ethics and Law

Malcolm K. Smith

• Publisher: Routledge
• Year: 2016
• Print ISBN:
  9781409460961
• eBook ISBN:
  9781317059349
• Topic: Medicine
• Subtopic: Law Theory & Practice

Advances in the field of Assisted Reproductive Technology (ART) have been revolutionary. This book focuses on the use of ARTs in the context of families who seek to conceive a matching sibling donor as a source of tissue to treat an existing sick child. Such children have been referred to as 'saviour siblings'. Considering the legal and regulatory frameworks that impact on the accessibility of this technology in Australia and the UK, the work analyses the ethical and moral issues that arise from the use of the technology for this specific purpose. The author claims the only justification for limiting a family's reproductive liberty in this context is where the exercise of reproductive decision-making results in harm to others. It is argued that the harm principle is the underlying feature of legislative action in Western democratic society, and as such, this principle provides the grounds upon which a strong and persuasive argument is made for a less-restrictive regulatory approach in the context of 'saviour siblings'. The book will be of great relevance and interest to academics, researchers, practitioners and policy makers in the fields of law, ethics, philosophy, science and medicine.

Chapter 1
Conceiving Saviour Children: Technological Advances, Ethical Concern and Legitimate Regulatory Oversight?

Introduction

Advances in the field of assisted reproductive technology (ART) have been revolutionary. The developments in these technologies have inevitably impacted on the nature of reproduction in modern society. Although such techniques were first developed to overcome infertility, they have more recently adopted a new focus, encompassing much wider potential.¹ These developments have occurred alongside advances in genetics and the mapping of the human genome. Reproductive techniques have progressed from their initial focus of alleviating the symptoms of infertility, towards a new direction of genetic determination and selection, and even potentially towards genetic enhancement.² These changes have resulted in regulatory oversight and have raised significant social and ethical concern.

Scientists can now screen human embryos to determine the genetics of an embryo before it is implanted during an in vitro fertilisation (IVF) cycle. This potentially enables prospective parents to select certain genetic characteristics or traits in their future children. Some families have used this technology to purposely conceive children as tissue donors for sick relatives (usually siblings of the donor). Such children have been referred to as ‘saviour siblings’ in the bioethical literature. However, I adopt the term ‘saviour children’ based on the view that the intended recipient of tissue does not necessarily have to be limited to a sibling. In this book I focus on the legal and regulatory frameworks that impact on the accessibility of this technology in Australia and the United Kingdom (UK) and analyse the ethical and moral issues that arise from the use of the technology for this specific purpose.

My analysis of the regulatory framework on this topic focuses on whether the state has a legitimate role to play in regulating the use of ART techniques for the creation of saviour children. Despite the potential benefits that might flow from allowing parents to conceive saviour children, there are a number of concerns outlined in the bioethical literature. Most frequently, these concerns centre on whether children who are purposely conceived as tissue donors might be negatively affected by the fate that is pre-determined for them by their parents. Questions arise as to whether such children might suffer psychological harm as a result of the circumstances surrounding their conception or whether the use of ART services for this purpose is unethical or contrary to public morality. I examine these concerns in terms of their relevance to the regulatory position and consider whether there is any justification for interfering with a family’s decision in such circumstances. My analysis in this regard is underpinned by liberal reasoning.

Embryo Selection Techniques and the Selection of Saviours

Pre-implantation genetic diagnosis (PGD) was introduced in 1990 as an experimental procedure so that it was possible to determine – from a number of embryos created in an IVF cycle – which contain the genetic identifiers for certain hereditary conditions or disorders.³ This allows ART service providers to identify ‘unaffected’ embryos, so that the transmission of a genetic condition or disease to a child is avoided. The process is undertaken as a step during IVF treatment, once the embryos are created. When the cells of the embryo begin to divide, one or two cells can be removed for genetic analysis.

When PGD was first developed its application was limited and there were problems with misdiagnosis. Initially, the technology could only be used to test for and prevent transmission of certain Mendelian diseases, such as cystic fibrosis and X-linked disorders.⁴ By the late 1990s the technology advanced further.⁵ In addition to screening embryos for specific genetic conditions, PGD techniques can also be used to positively select in favour of certain genetic characteristics.

As mentioned above, embryo selection technologies have been used in a number of cases for the purpose of selecting and implanting embryos on the basis of their tissue type with the aim of conceiving a tissue donor for a sick child. One of the reasons that families have opted to use this technology is that the success rate of a tissue transplantation procedure (referred to as hematopoietic stem cell transplantation (HSCT) procedures) is improved when the donor and recipient are siblings and of a matching tissue type.⁶ The tissue type of an individual is referred to as the human leukocyte antigen (HLA) type and is inherited from the genetics of both parents. As HLA type is inherited in this way, it is extremely unlikely that a parent or other relative will be an exact match to a child. Anasetti notes that each HLA mismatch (in basic terms, that is, each step away from an HLA identical donor) decreases the chance of disease-free survival for the recipient by 10 per cent.⁷ Therefore, without an identical HLA matched sibling donor, the chances of the transplant succeeding are diminished.

In 2000, Adam Nash was the first child in the world to be purposely conceived as a saviour with IVF and PGD.⁸ The Nash family gained access to the technology in a Chicago clinic in the United States of America (USA). The family intended to use the umbilical cord blood stem cells from the saviour, to treat their child Molly, who was born with Fanconi’s anaemia. This condition is a recessive disorder, meaning that it is transmitted when inherited from the relevant genes of both parents. The use of PGD in this case had two purposes: the first was to ensure that any child the couple conceived was born free from the genetic condition that Molly was born with, and the second was to ensure that the new child was of a matching tissue type to Molly.⁹

The technology has also been used in the UK. In 2001, the Hashmi family sought access to ART services to create a saviour child as a potential cure for their child Zain, who was born with the condition beta thalassaemia. This blood disorder impacts on the body’s ability to produce haemoglobin and red blood cells. It is genetically transmitted and ‘causes such severe physical symptoms that, without life-long medical care, life expectancy would be only a few years’.¹⁰ As a result, Zain required regular blood transfusions and repeated drug infusions.¹¹ It was hoped that the blood stem cells from the umbilical cord of a tissue-matched sibling could be used to cure Zain. As with the Nash family, the Hashmi family were motivated by the same two factors – to conceive a child who would be free from beta thalassaemia and to ensure that he or she would be a matching tissue donor to their child.¹² The ART centre in this case was required to gain permission from the UK regulatory body for authorisation to provide the requested services.¹³ The Human Fertilisation and Embryology Authority (HFEA) granted approval, commenting:

We have considered the ethical, medical and technical implications of this treatment very carefully indeed. Where PGD is already being undertaken we can see how the use of tissue typing to save the life of a sibling could be justified. We would see this happening only in very rare circumstances and under strict controls.¹⁴

The HFEA was subsequently faced with a further request to approve pre-implantation tissue-typing services in relation to the Whitaker family, who sought to conceive a tissue-matched child for their son, Charlie, who was suffering from the condition Diamond Blackfan anaemia. The condition is rare and results in a deficit of red blood cells.¹⁵ The symptoms are similar to other forms of anaemia,¹⁶ and treatment requires the performance of repeated transfusion procedures.¹⁷ The best chance of curing the condition is to perform a bone marrow transplant from a matched donor.¹⁸

The circumstances of the Whitakers were different to those of the Nash and Hashmi families as the condition affecting Charlie was not genetic. Diamond Blackfan anaemia is sporadic and onsets after birth. The chances of the Whitakers having another child with the same condition were no greater than the risk to the general population: ‘five to seven per million live births’.¹⁹ The use of PGD services was therefore intended only for the purpose of identifying and implanting an embryo of a matching tissue type to Charlie. This was one of the key reasons why the HFEA refused the ART centre permission to provide the requested services to the Whitaker family.²⁰

The HFEA was heavily criticised for its initial policy on this issue.²¹ As discussed throughout this book, the HFEA put forward a number of justifications to support the distinctions that were drawn in relation to its tissue-typing policy. Notably, the HFEA subsequently changed its policy to allow access to the technology in cases where it is required solely to establish tissue type.²² This restriction is therefore no longer imposed under the UK regulatory framework. However, as discussed in Chapters 2 and 3, access to the technology is restricted in such a way in some Australian jurisdictions, as ART services can only be provided to those who are infertile or at risk of transmitting a genetic condition when conceiving naturally. Therefore, the criticisms levelled at the HFEA’s reasoning on this topic are of relevance to the Australian approach on this issue.

Ethical and Moral Concerns

The use of PGD in this context demonstrates the shift in purpose of genetic testing, which has moved from disease prevention, towards positive selection of embryos on the basis of desired genetic characteristics.²³ The use of ART services for the creation of saviour children raises a number of concerns focused on the possibility that the saviour may be harmed by the circumstances surrounding his or her conception. For example, will the child suffer psychological harm by discovering that he or she was ‘selected’ for his or her potential to cure a relative? Will the child suffer harm by being born into a family setting with an exis...

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• List of Abbreviations
• Preface
• 1 Conceiving Saviour Children: Technological Advances, Ethical Concern and Legitimate Regulatory Oversight?
• 2 The Regulatory Landscape Relevant to Assisted Reproductive Technology
• 3 Regulating Access to and the Delivery of Pre-implantation Tissue-typing Services
• 4 Liberty and Reproductive Decision-Making
• 5 The Harm Principle as a Means for Justifying State Intervention and Regulation
• 6 Creating Saviour Children: What is the Harm?
• 7 Creating Saviour Children: The Wider Ethical and Moral Arguments
• 8 Regulating Assisted Reproductive Technology Services for the Creation of Saviour Children: A Way Forward
• Bibliography
• Index