chapter  1
5 Pages

Introduction

In October 2000 in the United States (US), Adam Nash was the first saviour sibling reported to have been born using a form of genetic screening technology known as preimplantation genetic diagnosis (PGD).1 Adam’s sister, Molly, was suffering from Fanconi’s anaemia, a rare hereditary blood disease. Doctors treating Molly’s parents used PGD to select an embryo that was both free of Fanconi’s anaemia and a direct tissue match for Molly. After four attempts, the couple conceived a healthy son. Adam’s cord blood was successfully transplanted to his sister Molly, which cured her disease. For the Nash family, Adam’s birth was a triumph of modern reproductive medicine that saved their daughter’s life. Despite its success for the Nash family, Adam’s birth opened up a new area of controversy in assisted reproductive treatment (ART) and raised ethical concerns about the welfare of the child to be born. The welfare of the child is a fundamental principle in assisted reproduction

and a key feature in ART regulation in the United Kingdom (UK) and Australia. The use of ART for selective reproduction2 raises particularly complex questions about the welfare of the child to be born. For example, how does selection impact on the identity of the child to be born? Can being brought into existence ever harm a child? Are children who are selected for a particular purpose treated as commodities? These questions require us to rethink the roles played by parents and the state in promoting the welfare of the child. For instance, should prospective parents be allowed to select a child with particular traits or characteristics? If so, what type of trait-selection is legitimate and where do we draw the line? Finally, who is in the best position to make decisions about the welfare of the child to be born? Is it the parents, clinicians or the state? The use of PGD to select saviour siblings has re-focused the debate on the welfare of the child to be born in recent years and compelled ethicists, policymakers, legislators, regulators and courts in the UK and Australia to reconsider the nature and role of the welfare of the child principle in assisted reproduction. To date, concerns about the welfare of the child in selective reproduction

have focused on the individual interests of the child to be born in being treated with respect and protected from harm. This book re-evaluates the

welfare of the child principle in the context of selective reproduction using applied ethics. It focuses on the controversial topic of saviour siblings as a case study for an in-depth evaluation of the welfare of the child born as a result of selective reproduction. There are several reasons for this. First, saviour sibling selection has been more widely accepted than other

types of selection, such as social sex selection and selecting in disability. This is because, for many people, saving the life of an existing child represents a legitimate reason for selective reproduction. To put it another way, saviour sibling selection more ‘plausibly falls within societal understandings of parental needs and choice in reproducing and raising children’.3 As a consequence, saviour sibling selection has been carried out in several countries, including the US, the UK and Australia, advancing the legal and ethical debate surrounding this form of selective reproduction considerably during the last 10 years. A second reason for focusing on saviour sibling selection is that much of the

debate about saviour siblings centres on the welfare of the child to be born. Saviour sibling selection is currently permitted in the UK and Australia, subject to ART regulation that promotes the welfare of the child to be born. There is therefore a wealth of academic, legal and policy debate on saviour siblings from these two jurisdictions on the welfare of the future child. A third and final reason for using saviour sibling selection as a case study is

that it enables discussion to remain focused on welfare of the child concerns without becoming side-tracked by broader societal concerns about ‘designer babies’ that arise more commonly in relation to other types of selection. The ‘designer babies’ objection to selective reproduction, based on concerns about eugenics and slippery slopes, is not a major issue for saviour sibling selection. Saviour siblings are not selected to ‘improve stock’ but rather to save the life of an existing child and the incidence of saviour sibling selection is likely to be very low.4 The debate about saviour siblings has therefore remained more focused on the welfare of the child and not been obscured by the ethical concerns about ‘designer babies’ that arise in relation to other more controversial applications of PGD. There are two primary ethical concerns about the welfare of the child

selected as a saviour sibling. The first is that the child is treated as a commodity. The second is that the child may be harmed physically, psychologically or socially. These two concerns, which have shaped the development of law and policy on selective reproduction in the UK and Australia, focus on the individual interests of the child to be born and pay little regard to the collective interests the child shares with his/her family. This book critiques the prevailing individualistic approach to the welfare of the child in assisted reproduction and proposes an alternative relational approach. It argues that a child living in an intimate family is both an individual and the member of an intimate collective and the welfare of the child to be born is inextricably linked with the welfare of his/her family. Instead of focusing on the individual interests of the child to be born, the child’s interests should therefore be considered in connection with the interests of other family members. As

previously mentioned, a third concern raised more broadly in relation to selective reproduction is that of ‘designer babies’, which reflects broader societal concerns about parents selecting the traits of their children. In Chapter 2, I describe how these three main ethical concerns –

commodification, harm and ‘designer babies’ – have shaped the debate about selective reproduction. I also explore the non-identity problem and reject the argument, commonly used to justify selective reproduction, that it is better to be born than not. I then introduce saviour sibling selection as the primary case study for an in-depth analysis of the welfare of the child principle in selective reproduction. I briefly explain some current regulatory approaches to saviour sibling selection that attempt to promote the welfare of the child to be born. In particular, I focus on the UK and Australian regulatory frameworks in which the welfare of the child to be born is a foundational principle. Although there is no clearly articulated ethical approach to the welfare of the child in either UK or Australian regulation, UK policy on the welfare of the child reflects a ‘harm-based’ approach, whereas at least some Australian jurisdictions promote a ‘best interests’ approach. I introduce an alternative ‘relational approach’ to the welfare of the child that highlights both individual and collective family interests. My relational approach, which is based on relational feminist and communitarian ethics, is explored in more detail in the second half of the book. Given the strong focus in assisted reproduction on the welfare of the child

to be born, it is important to understand what ‘welfare of the child’ means in this context. In Chapter 3, I examine the role and relevance of the welfare of the child principle in ART regulation. I begin by exploring the origins of the welfare principle in ART legislation in the UK and Australia. I then explore in detail the two key ethical concerns about the welfare of the child that have dominated the debate about saviour siblings – commodification and harm. I conclude that concerns about commodification and harm reflect an individualistic approach to the welfare of the child to be born, whose interests are treated as largely separate to and distinct from the interests of other family members. While the individual interests of the child to be born should be protected, a purely individualistic approach to the welfare of the child fails to adequately take account of the interests of the child as part of a family. Furthermore, given the interests of other family members in selective reproduction, a broader consideration of interests and relationships beyond those of the individual child to be born is necessary. I argue that, in the context of saviour sibling selection, the interests of the parents, their existing ill child, and any other siblings likely to be affected should be considered in connection with the interests of the child to be born in being treated with respect and protected from harm. In Chapter 4, I propose an alternative relational approach to the welfare

of the child to be born, which situates the interests of the child within the context of his/her family. Drawing on relational feminist and communitarian ethics, I argue that the welfare of a child is inextricably

connected to the welfare of the intimate collective that is his/her family. A comprehensive account of the welfare of the child therefore requires consideration of both the individual interests of the child to be born as well as the collective interests the child shares with his/her family. By recognising the importance of connection and interdependence within a family, this broader approach to the welfare of the child not only protects the child to be born but also the family that enables the child to flourish. Recognising that the welfare of the child to be born is not necessarily synonymous with the welfare of the family as a whole, I examine the role of familial duty as a justification for compromising some individual interests of family members in favour of the welfare of the family as a whole. However, given the vulnerability of the child to be born, I argue that there should be limits on how much parents can ask of a child in order to protect that child from exploitation, abuse or neglect. Applying my relational approach to the welfare of the child developed in

Chapters 3 and 4, I propose a relational model for selective reproduction in Chapter 5. I argue that a relational model, which recognises and accommodates individual and collective interests within a family, is more appropriate for regulating selective reproduction than a ‘harm-based’ or ‘best interests’ model. My relational model requires consideration to be given to the interests of all family members, not just those of the child to be born, in making decisions about selective reproduction. In particular, I emphasise the importance of developing an effective process to assist prospective parents in exploring the various interests within their family and deciding whether or not to select a child with specific genetic traits. There comes a point, however, at which compromise becomes sacrifice and the child to be born should be protected from exploitation, abuse or neglect. I therefore propose that the state should provide a threshold level of protection for the child to be born. I draw on the two main ethical concerns about saviour siblings discussed in Chapter 2 to formulate a threshold level of respect and protection from harm for the child to be born. Chapter 6 addresses issues associated with the implementation of a relational

model for selective reproduction by outlining a framework for regulating saviour sibling selection. I begin by raising a preliminary question about whether selective reproduction should be regulated at all. I argue that regulation is justified insofar as it protects the welfare of the child to be born and ensures high standards in treatment services. I then draw on elements of UK and Australian regulation to ‘map out’ my regulatory framework. I propose a permissive regulatory framework that protects the child to be born from exploitation, abuse and neglect and promotes a robust decision-making process without unnecessarily restricting reproductive choice. I conclude that decisions about saviour siblings should be made on a case-by-case basis by parents in collaboration with their healthcare team, in accordance with legislation and policy guidelines. The healthcare team should support parents in the decision-making process by providing information, counselling and

clinical ethics consultation. Decisions should also be subject to ethical oversight by clinical ethical committees to ensure the welfare of the child is adequately protected. Lastly, I explain how a relational framework for saviour sibling selection is less restrictive and more responsive to the individual circumstances of each case than current regulatory frameworks in the UK and Australia. I conclude in Chapter 7 by highlighting the benefits and burdens of a

relational model for selective reproduction and identifying areas where further research is needed. I explain that the relational framework for saviour sibling selection proposed in this book is intended as a starting point only, to trigger debate about how ethically complex decisions about selective reproduction might be made in the future. Other types of selection will no doubt raise additional concerns to those associated with saviour sibling selection and will require careful consideration and debate. In particular, selecting a child for non-therapeutic reasons, such as social sex selection or selecting for disability, challenges the way in which many people view the nature of reproduction and the parent/child relationship. By situating the child within the context of his/ her family, a relational model offers a more realistic and transparent lens through which to view the thorny issues posed by selective reproduction in the future.