An Ethico-Legal Evaluation of the Moral Principles Involved in the use of Reproductive Technologies in the Creation of Saviour Siblings

Introduction

This essay will evaluate the moral principles which are engaged in the creation of compatible sibling donors specifically for providing treatment to existing children. I will explain why using reproductive technology as a means to this end has no ethical standing. In order to achieve this, I will use deontological moral theories to defend the medico-legal principle of personal autonomy, and to rebut that of procreative autonomy. Compatible sibling donors, hereafter noted as ‘saviour siblings’, not only lack legal definition,¹ but also cause a deep divide between members of Parliament and the Courts. This is because the concept of them causes a struggle between two substantial principles: procreative autonomy and personal autonomy. I will argue throughout this essay that while there is no doubt that the creation of saviour siblings can bring about a positive end result by helping existing sick children, this utilitarian argument cannot trump the serious ethical issues which simultaneously arise.

Procreative Autonomy vs Personal Autonomy

Reproductive freedom is rooted in our human rights,² as we value people’s ‘right to control their own procreation’.³ This is what Dworkin calls ‘Procreative Autonomy’, the ethical principle by which couples should be regarded as free to choose how and when to reproduce, with no interference or constraints imposed by the State.⁴ Equally, a couple using reproductive technology to create a saviour sibling is arguably using methods available to them to bring about a beneficial end goal. This supports a heavily utilitarian argument, as it maximises the amount of good one can get out of the situation. Firstly, they are throwing a life-line out to their existing child and sparing them from future suffering,⁵ and secondly they are bringing a new life into this world as a member of a loving family.⁶ The latter bids homage to the importance of the sanctity of life by reiterating that it is ‘logically impossible’⁷ for anyone to be harmed through the process of existing. Taylor-Sand is highly supportive of this utilitarian outlook, arguing that the concept of saviour siblings should be seen as a collective family interest rather than an individual interest.⁸ Therefore, if we were to agree with this line of thought, we would find ourselves rooting for the concept of saviour siblings, based on a maximisation of ‘good consequences’ and strong moral values which prioritise family duties and reproductive freedom.

However, I find this argument to be not only naive, but also in serious breach of the concept of autonomy. Procreation is not an absolute right, and the rule of thumb is to give ‘the highest [level of] priority to the welfare of the child to be born’.⁹ Reproduction is primarily about bringing a new life on Earth, ‘whose welfare and autonomy deserve the highest attention from the State’.¹⁰ Thus personal autonomy comes into the equation. The principle of autonomy is often regarded as being more vital in medical ethics than that of beneficence;¹¹ therefore, although the use of saviour siblings brings about a positive result which benefits the older sibling, this indirect benefit cannot ethically be placed higher in the hierarchy of moral principles. Parents have a moral obligation towards their future children¹² as well as their existing children, and therefore are Family Law Towards the Millennium: Essays for P.M. Bromley (Butterworths, 1997), 288.

obliged to consider the welfare and quality of life of the saviour sibling. Being respected as an autonomous person means having the capacity and liberty to make decisions which are free from external control;¹³ no one, not even one’s parents, should have the authority to interfere with the bodies of their children, especially doing so since before their conception. I will thus argue throughout this essay that couples who decide to use reproductive technology to create and use a saviour sibling are not adequately considering the welfare and autonomy of the new child, and therefore should not ethically be allowed to engage in such action.

The Principle of Beneficence: A Utilitarian Argument

Beauchamp and Childress introduced what they believed to be the four main principles in medical ethics as beneficence, non-maleficence, autonomy and justice.¹⁴ The principle of beneficence refers to a series of positive actions intended for the purpose of benefiting others. It therefore reinforces a strong utilitarian argument, like that presented by John Stuart Mill: ‘actions are right in proportion as they tend to promote happiness, wrong as they tend to promote the reverse of happiness’.¹⁵ If we quantify the proportion of happiness caused by saviour siblings, we can arguably reach a pleasant conclusion. Burns argues that the use of preimplantation genetic diagnosis technology along with HLA tissue typing brings about more than one ‘good’ ending: a new healthy child is created, who otherwise could not have existed, guaranteed to be free from the genetic disease which burden their sibling.¹⁶ In addition, the use of these reproductive technology methods have led to new treatments being available for the older ill child, by way of sibling tissue and stem cell donation. Therefore, the creation and use of saviour siblings can almost be seen as hitting two birds with one stone; saving an existing child and bringing another into the world.

In essence, the principle of beneficence can be bent to the saviour sibling’s favour. The PGD process has unarguably benefitted them, as it has given them the chance at a healthy life free of the genetic diseases suffered by their sibling. This argument is similarly depicted by Parfit’s non-identity problem, where a different series of events (method of conception) inevitably leads to a series of different outcomes (a child free of genetic diseases).¹⁷ Had the parents not decided to use reproductive technology to conceive a saviour sibling, that particular child would never have been born; and equally, any child conceived through ‘natural’ reproduction would have had a high chance of suffering from the same illnesses as their elder sibling. Such a theory highlights the importance of the sanctity of life. It cannot reasonably be said that a child is harmed by coming to exist, and even if a saviour sibling would have to live with certain impairments as a donor, these cannot be outranked by the overall benefit of their existence.

However, although the use of saviour siblings have good intentions and to an extent also positive consequences, it is important to also note the negative impacts which burden the younger child. Despite consequentialist theories focusing on the greater good, they equally oppose limiting an individual’s personal autonomy for the greater good. Focusing back on Mill’s On Liberty, he argues there is a moral imperative to protect individual liberty against the ‘tyranny of the majority’.¹⁸ One cannot morally genetically engineer a child planning for it to act virtuously towards it's sibling as their primary donor. It would simply be impermissible to place such a duty on a child before it is even born, and using its body as a ‘source of spare parts’¹⁹ ready to be given to it's elder sibling on demand. Being a living donor is a highly altruistic act, freely entered into as an expression of personal autonomy and choice - two things a baby cannot weigh in on. Although Mill’s utilitarian theory is based around the greatest amount of good for the greatest number of people, personal autonomy is nonetheless a cornerstone of the theory. One must look at the consequences of an action, however more importantly it is better to allow people to plough their own furrows. An imposed lack of freedom to make one’s own individual choices regarding one’s own body could very much lead to a reduced overall sum of happiness, which would cancel out the outcome’s beneficence. It therefore cannot be ethically acceptable to force a child into donation without them having the ability to make his/her own decision, regardless of the positive consequences to the ill sibling and parents.

The Principle of Autonomy: A Deontological Approach

With medical treatment moving away from paternalism and towards self-determination, the presumption of freedom²⁰ has been established; individuals have the freedom to choose what happens to their bodies. The notion of informed consent has thus developed into being the cornerstone principle of organ donation, as the ability to give consent is a clear manifestation of one’s personal autonomy.²¹ Cases of saviour siblings involve a balancing exercise of ethical interests, which gives rise to difficult decision making. For example, Glover argues that one must have ‘very powerful reasons to resist the means by which a child’s life can be saved’.²² Whilst it is very easy to agree with such a statement in principle, we cannot use our compassion towards a sick child to justifying an ‘ethical carte blanche’²³ which would not only limit another child’s autonomy, but also damage his or her bodily integrity. Kant brings these competing interests into focus by arguing that there are certain moral statements which are permanently valid for all individuals at all times, what he calls a Categorical Imperative.²⁴ This ethical theory establishes an absolute principle against any kind of manipulation or exploitation for the benefit of others.²⁵ His second formulation of the Categorical Imperative reads that individuals must ‘act in such a way that you treat humanity ... always at the same time as an end and never simply as a means’.²⁶ Kantian ethics focuses primarily on valuing human beings as an end within themselves, rather than being treated as an object used to achieve an end. Although saviour siblings can be brought into a loving family, this does not take away the fact that they are made from ‘deliberate intervention’,²⁷ and will thus always have a secondary purpose in life.²⁸ This Kantian principle is fundamental to any ethical argument, and goes hand in hand with the principle of bodily integrity. Any action which degrades an individual by treating them as a form of machinery benefiting others ‘cheapens and devalues’²⁹ their moral status as a human being.³⁰ Violating a person’s bodily integrity cannot be seen as anything but a form of tyranny.³¹ As moral beings, we objectively cannot ethically justify the use and creation of saviour siblings, because they will throughout their whole lives be ‘witness[es] to the intentions’ of their designers, and thus will permanently be defenseless to further demands on their bodies.³² As Earl Ferrers stated, ‘you do not have to be a butcher to smell when the meat is bad’.³³ One cannot ignore the ethical issues raised by saviour siblings. The temptation to take from the saviour sibling’s body will always be there if the ill child relapses, therefore they will always be vulnerable to constant exploitation for the benefit of their sibling.³⁴

The Welfare Principle: Commodification of Saviour Siblings

There is a strongly held moral belief that when using reproductive technologies there is an unmistakable obligation to take the welfare of the child created into account.³⁵ Burns even goes on to say that the welfare principle is the main ethical and legal pillar which underpins the Human Fertilisation and Embryology Act 1990.³⁶ However, despite placing so much theoretical importance on the welfare of the child being created, this essay will argue that the welfare of saviour siblings is not adequately taken into consideration. Enormous physical and mental burdens are placed upon these young children to save their older sibling, notwithstanding the potential psychological harm they may suffer if their donation fails to make a difference.³⁷ These psychological strains must not be dismissed in ‘a rose-coloured enthusiasm’³⁸ for the potential benefits for the elder sibling. Despite many seeing the family sphere as a safe and loving space,³⁹ for some there is still a real risk of being used or even abused.⁴⁰

Focusing back on Kant’s Second Categorical Imperative, although his argument lies in not treating a person merely as a means to an end, I will argue that due to the welfare principle, this distinction is inconsequential in the case of saviour siblings. Genetically engineering a baby to specifically match an already existing ill child, and bringing them into this world to act as said child’s primary donor is in essence parallel to a slave analogy. The parents may want a second child, and may equally love this second child, however this does not cancel out the primary reason for bringing said child to life. The main intention is to provide a donor; therefore, the saviour sibling is being used as a means towards an end, indefinitely charged with the task of treating the ill child, much like a slave bound to its owners.⁴¹ Conceiving a child for a specific purpose, especially that purpose being acting as an instrument of donation, cannot be ethically justified, and the State should not be involved with such creations. A common pro-saviour sibling counter-argument is that couples generally have a multitude of reasons for which they have children, and consequently although they plan on using a saviour sibling for a certain purpose, it does not take away their wanting of another child.⁴² This is all well and good, however it is simply not a strong enough argument to ethically justify the usage of a minor’s body parts without their ability to understand or consent to such medical treatment. Whether a couple naturally conceived a child for an arrange of reasons is one thing, however the State has certain duties and obligations towards the society it rules over. Due to these responsibilities, it would appear to be unethical to give the green light to the creation of children for the primary purpose of donating to an existing sick child. As Gary Street MP stated in 2008, ‘[we] should not seek a physical cure for one child at the expense of possible additional mental challenges for [another]’.⁴³ The primary intention which binds saviour siblings goes against Kant’s Categorical Imperative, as it diminishes the intrinsic value of the child. In cases such as these, the ends do not justify the means. A deontological approach is therefore more appropriate than a consequentialist one, as maximising utility is inherently subjective and cannot be quantified.⁴⁴ To prevent children created from assisted reproduction from being used as a mere commodity, we must assess the ‘moral and ethical nature of the act, rather than focusing on the consequences’.⁴⁵

Relational Approach - A Collective Interest?

Taylor-Sands pitched a rather controversial approach to the use of saviour siblings in her writing, arguing that instead of pitting the new child’s interest against the interest of the existing ill child and the family, we should be looking at the interests of the family as a whole.⁴⁶ This relational approach draws on utilitarianism, which Virginia Held argues is more appropriate than the Kantian approach as it recognises the importance of satisfying needs of people as a group, weighing such needs ‘in the calculus of preferences satisfaction’.⁴⁷ As selective reproduction affects the interests of the family as a whole rather than as separate individuals, one cannot deny that the interests of the new child are ‘inextricably linked’ with those of his/her family members.⁴⁸ One could go even further by arguing that a saviour sibling owes a duty to it's family members simply by virtue of having been born into said family.⁴⁹ Attaching a duty to the newborn acts as a justification for compromising the individual child’s welfare interest in order to achieve the ‘greater good’ by treating the ill child and relieving pressure from the parents. Taylor-Sand’s broader conception is based on the notion of human flourishing, placing the utmost importance of family values as ‘the family is the centre of most people’s lives’.⁵⁰ Medical law has slowly started to opt for a more relational approach, especially in cases of organ donation⁵¹ and confidentiality regarding genetic risks.⁵² This development is grounded in the importance of recognising ‘the special value of intimacy’ ⁵³ in bioethical concerns which involve the family in decision making processes. Families involved with PGD testing are indistinguishably linked, as all the family members embark on a shared journey to save the existing ill child’s life.⁵⁴ Consequently, academics such as Held and Taylor-Sands argue that using a relational approach to saviour siblings is more appropriate. However, one can recognise familial values and the importance of family decisions, forcing it to become a universal moral imperative.⁵⁵ Saviour siblings are placed in an incredibly precarious position, as the part they have been chosen to play in their family unit is placed upon them even before their conception. As the child thus has no say on the matter, the protection of his or her welfare must be paramount to ensure it is not subordinate to the interests of others.⁵⁶ Justifying the use of genetic technology in order to create a child who will doubtlessly experience a considerable amount of physical and psychological pain throughout their life seems to arguably be quite morally repugnant. Even if the children are not harmed by being created, they will nonetheless be subject to harmful events during their lifetime.⁵⁷ Firstly, they will undoubtedly suffer harm by going through painful and uncomfortable procedure from a young age. There are clear physical risks associated with the possible stem cell donations saviour siblings might have to engage in. For example, research shows that bone marrow transplants in cases of children patients involve major risks associated with general anaesthesia, fatigue and pain.⁵⁸ Secondly, there is a high chance they will live in a constant state of psychological harm. They will learn that they were created for a specific purpose, to act as a donor to their sibling. Sparrow and Cram show the commodification of saviour siblings by applying a simple but for test:⁵⁹ but for a couple needed a stem cell transplant for their existing child, they would not have used reproductive technology to engineer the new child.

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¹ Burns, S., The Law on Assisted Reproduction (Bloomsbury Professional, 2012), 105.

² Article 8: The Right to Family Life, European Convention of Human Rights

³ Dworkin, R., Life’s Dominion (Harper Collins, 1993), 148.

⁴ Ibid.

⁵ Burns, S., op. cit. note 1, 105.

⁶ Ibid, 152.

⁷ Bennett R., and Harris, J., ‘Are there lives not worth living? When is it morally wrong to reproduce?’ in Ethical Issues in Maternal-Fetal Medicine (Cambridge University Press, 2002), 322.

⁸ Taylor-Sands, M., ‘Saviour Siblings and Collective Family Interests’ (2010) 29 Monash Bioethics Review 2.

⁹ Harris, J., ‘The Welfare of the Child’ (2000) Health Care Analysis 8, 33.

¹⁰ Brazier, M., Campbell, A., & Golombok, S., ‘Surrogacy: Review for health ministers of current arrangements for payments and regulation - Report of the review team’ (1998) Department of Health and Social Care.

¹¹ Beauchamp, T., ‘The Four Principles’ Approach to Health Care and Ethics’ in Ashcroft RE et al. Principles of Health Care Ethics, (2nd ed, John Wiley & Sons Ltd, 2007), 272.

¹² Brazier, M., ‘Parental Responsibilities, Foetal Welfare and Children’s Health’ in Herring, J., Bridge, C., (ed)

¹³ McLean, S., Autonomy, Consent and the Law (Routledge, 2009), 40.

¹⁴ Beauchamp, T., ‘The Four Principles’ Approach to Health Care and Ethics’ in Ashcroft RE et al. Principles of Health Care Ethics, (2nd ed, John Wiley & Sons Ltd, 2007).

¹⁵ Mill, J.S., ‘Utilitarianism’, repr. In On Liberty and Other Essays (Oxford UP, 1998), 137.

¹⁶ Burns, S., op. cit. note 1, 150.

¹⁷ Parfit, D., Reasons and Persons (Oxford University Press, 1984), 358-360.

¹⁸ Mill, J.S., ‘On Liberty’, repr. In On Liberty and Other Essays (Oxford UP, 1998), 8.

¹⁹ Lord Alton, Hansard, 4 December 2007, col 1649.

²⁰ den Hartogh, G., ‘Can consent be presumed?’ (2011) J Appl Philos, 28, 295–307.

²¹ Burns, S., op. cit. note 1, 168.

²² Glover J. Quoted in: BBC News. Doctor plans ‘‘designer baby’’ clinic. 11 December 2001, h ttp://news.bbc.co.uk/1/hi/health/1702854.stm.

²³ Lord Alton, Hansard, 4 December 2007, col 1650.

²⁴ Kant, I, Groundwork of the Metaphysics of Morals (Hackett, 1993), Volume 4 Prussian Academy Edition

²⁵ Lord Alton, op. cit. note 23: col 1651-1652.

²⁶ Kant, I, op. cit. note 24, 4:421.

²⁷ Burns, S., op. cit. note 1, 170.

²⁸ Gary Street MP, Hansard, 12 May 2008, col 1108.

²⁹ Burns, S., op. cit. note 1, 184.

³⁰ Baroness O’Cathain, Hansard, 15 January 2008, col 1270.

³¹ Harris, Consent and End of Life Decisions (2003) Journal of Medical Ethics 29, 11.

³² Baroness O’Cathain, op. cit. note 29.

³³ Earl Ferrers, op. cit. note 29: col 1282.

³⁴ Burns, S., op. cit. note 1, 184

³⁵ Sheldon, S., and Wilkinson, S., ‘Should selecting saviour siblings be banned?’ (2004) 30 J Med Ethics 533, 535.

³⁶ Burns, S., op. cit. note 1, 152.

³⁷ Burns, S., op. cit. note 1, 155.

³⁸ Lord Alton, Hansard, 4 December 2007, col 1652.

³⁹ Taylor-Sands, M., ‘Saviour Siblings and Collective Family Interests’ (2010) 29 Monash Bioethics Review 2, 12.9.

⁴⁰ Lord Winston, Hansard, 15 January 2008, col 1280.

⁴¹ Burns, S., op. cit. note 1, 154.

⁴² John Bercrow MP, Hansard, 12 May 2008, col 1102.

⁴³ Gary Street MP, Hansard, 12 May 2008, col 1108.

⁴⁴ Burns, S., op. cit. note 1, 196.

⁴⁵ Burns, S., op. cit. note 1, 154.

⁴⁶ Taylor-Sands, M., Saviour Siblings: A Relational Approach to the Welfare of the Child in Selective Reproduction (Routledge, 2013), 27.

⁴⁷ Taylor-Sands, M., ‘Saviour Siblings and Collective Family Interests’ (2010) 29 Monash Bioethics Review 2, 12.1.

⁴⁸ Taylor-Sands, M., ‘Saviour Siblings and Collective Family Interests’ (2010) 29 Monash Bioethics Review 2, 12.1.

⁴⁹ Gavaghan, C., ‘Saviour Siblings: no avoiding the hard questions’ (2015) 41 J Med Ethics 931, 931.

⁵⁰ Blustein, J. 'The family in medical decision making' (1993) Hastings Center Report 23 (3): 6-13., 12. 51 Dicks, S., Northam, H., and Boer, D., ‘An exploration of the relationship between families of deceased organ donors and transplant recipients: A systematic review and qualitative synthesis’ (2018) Health Psychol Open 5(1) <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6069040/> (Accessed Jan 2020).

⁵¹ Lucassen, A., and Gilbar, R., ‘Disclosure of genetic information to relatives: balancing confidentiality and relatives’ interests’ (2018) 5 J Med Genet 4, 285.

⁵² Lucassen, A., and Gilbar, R., ‘Disclosure of genetic information to relatives: balancing confidentiality and relatives’ interests’ (2018) 5 J Med Genet 4, 285.

⁵³ Nelson, J., 'Taking families seriously' (1992) The Hastings Center Report 22 (4): 6-12., 6.

⁵⁴ Taylor-Sands, M., ‘Saviour Siblings and Collective Family Interests’ (2010) 29 Monash Bioethics Review 2, 12.9.

⁵⁵ Gavaghan, C., ‘Saviour Siblings: no avoiding the hard questions’ (2015) 41 J Med Ethics 931, 931.

⁵⁶ Northam, H., and Boer, D., ‘An exploration of the relationship between families of deceased organ donors and transplant recipients: A systematic review and qualitative synthesis’ (2018)

⁵⁷ Blustein, J. 'The family in medical decision making' (1993) Hastings Center Report 23 (3): 6-13., 12. 51

⁵⁸ Gavaghan, C., ‘Saviour Siblings: no avoiding the hard questions’ (2015) 41 J Med Ethics 931, 931.

⁵⁹ Northam, H., and Boer, D., ‘An exploration of the relationship between families of deceased organ donors and transplant recipients: A systematic review and qualitative synthesis’ (2018)