Conception of Saviour Siblings: Ethical Perceptions of Selected Stakeholders in Malaysia

Abstract

The conception of saviour siblings using preimplantation genetic diagnosis coupled with human leukocyte antigen (HLA) typing or HLA typing alone is controversial and receives a wide divergence of legal responses among countries around the world. The resulting child conceived through this procedure is dubbed a ‘saviour sibling’ as the child can potentially act as a compatible donor for an elder ailing sibling who needs a haematopoietic stem cell transplantation. At present, the acceptability of this procedure in Malaysia is ambiguous as there is no specific statute governing assisted reproductive technology, and the guideline issued by the Malaysian Medical Council does not expressly address this issue. The ethical arguments relating to the conception of saviour siblings in the current literature are mainly thought to reflect a liberal viewpoint which is predominantly Western in nature. This paper seeks to explore the perception of selected key stakeholders on the acceptability of and ethical concerns related to this procedure in the Malaysian context. The findings indicate that stakeholders generally support the conception of saviour siblings and some of their concerns echo the Western viewpoint. Interestingly, many were highly anxious about its economic implication, which is rarely discussed in the current literature on saviour siblings.

Introduction

A haematopoietic stem cell (HSC) transplantation is the only curative therapy for children who suffer from diseases which affect their haematopoietic and immune systems, such as beta thalassaemia and sickle cell disease (Angelucci et al. 2014; Shenfield et al. 2005). A successful transplantation requires that both donor and recipient have compatible human leukocyte antigen (HLA) types. Moreover, evidence suggests that there is a higher success rate, and less complications occur in cases involving HLA-matched siblings compared to unrelated compatible donors (Shenfield et al. 2005; Kahraman et al. 2014; Kakourou et al. 2017). Therefore, an HLA-matched sibling is an ideal donor for an ill child. However, given that individuals inherit half of their HLA type from their mothers and half from their fathers, there is only a one in four chance of naturally conceiving two HLA-matched children. The development of in vitro fertilisation (IVF) technology used in conjunction with preimplantation genetic diagnosis (PGD) and HLA typing has now made it possible for parents to test and select an embryo that is not only free from serious medical conditions but who is an HLA match for their ailing child. The resulting child can potentially act as a compatible donor for the ailing sibling who needs an HSC transplantation and, therefore, is dubbed a ‘saviour sibling’.

The conception of saviour siblings is controversial, and countries around the world do not have consensus on its acceptability and how it should be regulated. The legality of this procedure in Malaysia is fraught with uncertainty. This is because there is no specific statute that governs assisted reproductive technology in this country. The guideline on assisted reproduction issued by the Malaysian Medical Council (the MMC Guideline on Assisted Reproduction) contains provisions on PGD. Clause 14 of this guideline provides that PGD is primarily used to avoid genetic abnormalities and sex-linked diseases from being passed down to the potential offsprings. It further recommends that PGD should only be applied for diseases which are serious and life-threatening. Embryo selection for conditions not associated with any disability or serious medical condition is considered unethical. Although this guideline also states that some have tried to conceive saviour siblings using PGD and HLA typing, it does not expressly state the acceptability of such procedure (Malaysian Medical Council 2006). However, it has been contended that if interpreted broadly, and by taking into consideration of its guiding principles, the MMC Guideline on Assisted Reproduction does not seem to prohibit the conception of saviour siblings in Malaysia (Kuek et al. 2019).

A prolific body of literature has developed in debating on the acceptability of conceiving saviour siblings. However, most of the contemporary arguments in this literature appear to reflect a liberal viewpoint which is predominantly Western in origin and nature. There is a markedly lack of literature that discusses the ethical perspectives of Asian regions on this issue, particularly countries which are culturally pluralistic. In Malaysia, a number of studies have elicited the views of medical professionals (Olesen et al. 2016a), potential PGD users (Olesen et al. 2016b) and religious scholars in Islam, Christianity and Buddhism (Olesen et al. 2016c) on the use of PGD for disease avoidance. However, the practice of selecting an embryo for the purpose of creating a child who will be used as a donor sibling is likely to raise very different concerns as compared to selecting embryos to avoid certain diseases. Given the paucity of Asian viewpoints, it was thought important to address this gap and begin by exploring the perceptions of selected local stakeholders on the acceptability of and the main concerns raised by the conception of saviour siblings in Malaysia. This is because conception of saviour siblings is controversial in nature. More significantly, attempts have been made in private medical practice to conceive saviour siblings. In November 2019, one of the fertility clinics in Malaysia proclaimed that they offer saviour sibling programme (Sun 2018; Healthcare Today 2019). Therefore, if any regulation of this procedure is to be enacted, it should be guided by understanding of societal values, ethical considerations and concerns of the key stakeholders in the country.

The article proceeds in 5 sections. Second section discusses the aim of the study and the methodology employed. In third section, the main ethical concerns and counter arguments pertaining to the conception of saviour siblings as expressed in current literature are examined. Fourth section sets out the perceptions of the participants and compares them against the views in the academic literature on the ethics of conceiving saviour siblings. Fifth section concludes the ethical concerns of conception of saviour siblings in the Malaysian context and suggests that clear legislation be enacted to ensure responsible use of this technology.

Study Aim and Method

This study looked to explore the views of local key stakeholders on the conception of saviour siblings. Semi-structured interviews were conducted with eighteen participants from two categories. The first category consists of medical practitioners and a scientist (seven participants) based in Malaysia who have knowledge, expertise or experience of IVF, PGD, HLA typing or HSC transplantation. The second category comprises eleven participants, namely, seven beta thalassemia major patients who are transfusion-dependent and four parents of patients suffering from haematological condition such as beta thalassaemia major and acute lymphoblastic leukaemia. Patients of this type of disease were selected because in jurisdictions that allow the conception of saviour siblings, one of the diseases that they seek to cure is beta thalassaemia major (Kuliev and Verlinsky 2004).

As this study sought to generate insights into the selected stakeholders’ views about the acceptability of and their main concerns relating to the conception of saviour siblings in Malaysia, participants were mainly selected using purposive sampling, based on their expertise, knowledge, and experience. They were not quantitatively representative of a particular population, and the results of the interviews are not meant to be generalised. The medical practitioners and the scientist were identified through Internet searches of the websites of selected institutions, followed by appointments for interviews. However, there were two phases of recruitment for parents of patients and patients themselves. The initial stage was done through personal connections, but only four participants were recruited. As it is harder to identify and locate the participants for this category, a second phase of recruitment was done through snowball sampling, namely, referral by the participants recruited in the initial phase. This managed to yield another seven participants.

Face-to-face interviews were conducted between May 2017 and April 2018. Interviews lasted between 30 and 90 min. These interviews were audio-recorded and also recorded in note form. The interviews were subsequently transcribed for analysis. The study was approved by the University of Malaya Research Ethics Committee (UMREC) and the Medical Research and Ethics Committee (MREC), Ministry of Health Malaysia.

This study adopts thematic content analysis. Transcripts and interview notes were analysed by identifying themes that emerged from the data collected. Basically, chunks of data which demonstrate interesting features that are relevant to the acceptability and ethical concerns of conception of saviour siblings are coded. Subsequently, the codes that appear to have common features and reflect a meaningful pattern are clustered into themes. These themes will be discussed in the “Findings of the Interviews” section of this article.

The Ethics of the Conception of Saviour Siblings

The current literature acknowledges the immense technological promise offered by the conception of saviour siblings but at the same time recognises a number of profound ethical issues that arise from this practice. In general, academic literature in this area reflects a liberal rather than a conservative position. Four main ethical concerns can be gleaned from the current debate.

Instrumentalisation of the Future Child

One of the key criticisms raised against the conception of saviour siblings is that the practice amounts to instrumentalisation of the saviour sibling. This may occur in two ways. First, parents who seek to conceive a saviour sibling for their existing ill child might be said to have a wrong procreative motive in that the saviour sibling is conceived for instrumental reason, which is to be a donor for their ailing child (Adams 2003). It has also been contended that when parents conceive a child to save another sick child, they violate the principles of beneficence and nonmaleficence in medical ethics as there is no medical benefit for the saviour sibling, but at the same time, there could be risk in the procedure (Alnasir et al. 2020). Secondly, there are concerns that the saviour sibling will only be valued and loved conditionally as its value lies in being a means to cure its sick sibling. According to this line of argument, the conception of saviour siblings infringes Immanuel Kant’s second formulation of the categorical imperative (practical law), which requires every rational being to exist as an end in itself and never be used merely as a means (Kant 2006). In this context, the saviour sibling is treated as a mere tool to treat its ailing elder sibling.

However, supporters of saviour siblings dispute such anti-instrumentalisation arguments on the ground that children are often conceived for other instrumental reasons, such as to balance a family or provide a playmate for an existing child. Parents in these situations are not condemned for their procreative motives (Sheldon and Wilkinson 2004; Freeman 2006; Wilkinson 2010). Instead of assessing the parents’ procreative motives, the more relevant question is how the parents treat the saviour sibling after he is born. Anti-instrumentalisation arguments are also refuted as misconstruing the Kantian ‘means-end’ imperative. The Kantian principle states that an individual should never be treated merely as a means to an end. Therefore, exploiting a person as a mere tool to achieve one’s goal is prohibited. However, Kant did not prohibit a person from being treated partially as a means to an end, as long as that person is at the same time treated as an end (Wood 1999; Boyle and Savulescu 2001; Pennings et al. 2002). A saviour sibling is not instrumentalised as long as the parents value and love him for his own sake. The fact that the parents are willing to make tremendous effort to conceive another child to cure their existing sick child is likely to indicate that they are dedicated to the welfare of their children and they are likely to love the donor child for his own sake (Devolder 2005).

Possible Physical Harm to the Future Child

Concerns have also been raised about the potential of physical harm to saviour siblings. This harm might eventuate in one of two ways. First, there are inherent risks associated with the technology used in IVF, embryo biopsy (PGD with HLA typing or HLA typing as a sole clinical procedure) and HSC donation. Second, there are fears that the saviour sibling may be harmed by repeated requests to donate HSC every time the sick sibling relapses.

The risk of physical harm associated with the use of technology appears to be low. Although there are inherent risks associated with IVF (Hansen et al. 2002),1 it is now a fairly routine procedure and acceptable in most countries, including Malaysia. PGD and HLA typing, however, are more invasive in that they involve removing one or more cells from the embryo for genetic testing. Nevertheless, the literature seems to suggest that there is little risk of short-term harm to the embryo, though there is a recognition that follow-up studies to assess long-term effects are needed (Lancet 2001; Bellamy 2005).

The risks associated with HSC transplantations depend on the source of HSC and how the cells are collected. There are three methods of procuring HSC—the collection of umbilical cord blood, peripheral blood stem cells and harvesting of bone marrow. Although the first method does not entail any risk to the donor, there are drawbacks in relation to the efficacy of the treatment (Lucarelli and Gaziev 2016). Peripheral blood stem cell transplantation is less commonly used for paediatric donors and has short-term side effects such as fatigue, difficulty in walking and sleeping (Committee on Bioethics 2010). The main risk of bone marrow harvesting is the use of anaesthesia (Rubeis and Steger 2019).2 Significantly, these risks are considered low (Strong et al. 2011).

Despite the fact that an HSC transplantation poses a small risk, the possibility that a saviour sibling may be subjected to repeated requests for a donation may be harmful to the child. While a valid concern, the welfare of a saviour sibling can be safeguarded through legal means by imposing certain restrictions to the number of HSC donations by a child donor.

Possible Psychological Harm to the Future Child

It has been contended that a saviour sibling may suffer psychological harm if he discovers that he was conceived solely or partly to be an HSC donor for his ailing sibling. However, there appears to be insufficient empirical evidence to support such an allegation (Ram 2006). Conversely, it can be argued that there could be potential psychological benefits for the saviour sibling, knowing that he has contributed to the attempt to save or cure his ailing sibling, regardless of whether the HSC transplantation is successful or not (Strong et al. 2011). However, whether such psychological benefit outweighs the medical risks of the procedure, even if it may be small is arguable (Rubeis and Steger 2019).

In the past, studies have been done on the psychosocial experience of paediatric sibling donors of HSC transplantations. In cases of unsuccessful HSC transplantation, some sibling donors were depressed, angry or felt guilty especially if the death of the sick siblings was directly associated with the failure of engraftment. The sibling donors would also have negative feelings when they were not well informed about the risks of the HSC transplantation and they failed to receive emotional support after the death of the sick siblings. In contrast, sibling donors who participated in successful HSC transplantations mainly felt positive impacts in terms of closer family relationship, enhanced self-esteem and increased insights into their siblings’ illness (MacLeod et al. 2003). Such studies were generally done on donor siblings and not specifically on saviour siblings. Therefore, nothing suggests that a saviour sibling conceived by embryo selection technologies would suffer greater psychological risk compared to an HLA-matched sibling born by natural conception if both were to act as HSC donors. In any event, any possible negative psychological impacts on the child donors including saviour siblings can be minimised by providing suitable information, parental care, emotional support and attention to them.

The Conflicted Position of the Parents

In a family where a child is conceived to be an HSC donor for a sibling, parents face an intense conflict of interest and commitment. The transplantation is intended for the benefit of the ailing child, but this will inevitably subject the healthy saviour sibling to the risk of HSC donation, which includes bodily pain. As a minor is legally incompetent to consent to any donation, the decision has to be made by the parents (Medical Development Division 2009). It is impossible for parents to make an impartial decision in this type of circumstance. Given the underlying impetus for creating a savour sibling, parents are likely to prioritise the immediate interests of the sick child and in doing so may compromise on the interests of the saviour sibling.

There are two possible responses to this problem. First, the fact that parents may be in a conflicted situation regarding decisions on whether to consent to HSC donations does not mean that the creation of saviour siblings is prima facie unethical and harmful. The harm in this situation is the failure to weigh the interests of both donor and recipient fairly. Therefore, it is entirely possible to place safeguards within the system to ensure that decisions of parents are scrutinised or that the appointment of independent third parties to protect the interests of saviour siblings.

Secondly, Taylor-Sands provides a different lens by which to view the notion of interests. She argues that the decision whether to conceive a saviour sibling should be based on the ‘relational approach’ which focuses on the collective interest of the family, rather than the individual interest of the resulting child. This is because the saviour sibling’s individual welfare is so interconnected with the interest of the family, to the extent that individual compromise may be justified by the intimacy of the family (Taylor-Sands 2013). Following this line of argument, the conception of saviour siblings and the subsequent HSC donation after their birth to cure their ailing siblings are acceptable.

Findings of the Interviews

Similar to the debates in academic literature, there were divided views among the selected local stakeholders on the acceptability of the conception of saviour siblings in Malaysia. The majority of the participants interviewed in this study supported the conception of saviour siblings, although at the same time they raised some concerns. Two of the medical practitioners who were interviewed opposed the conception of saviour siblings. Their objection, however, was not based on any ethical issues but on the reason that HSC transplantation can be performed through other alternatives such as matched unrelated donor or even haploidentical transplantation.

Nevertheless, this study identifies four themes or main concerns raised by the Malaysian participants on the issue of conceiving saviour siblings. Interestingly, some of these concerns map alongside the earlier discussion in the academic literature.

Risk of Physical Harm

There appears to be consensus among almost all the parents (three out of four) and patients (six out of seven) that their main concern with the conception of saviour sibling is the possible physical risk or harm to the saviour sibling and the intended recipient of the HSC transplantation. These participants were concerned if the embryo biopsy will cause harm to the embryo who will subsequently be the resulting child. They also posed the question on whether donation of HSC will harm the saviour sibling and how safe it is to perform HSC transplantation on the ailing child. These responses match the ethical consideration of potential physical harm on saviour siblings as discussed in the academic literature. The safety and well-being of the patients, children or future offsprings are at stake. Being lay persons, the patients and parents of patients may not be aware that different types of HSC donation may entail different levels of risk or harm. For instance, the medical risk of collecting umbilical cord blood is much lower than harvesting bone marrow from a saviour sibling.

The question on whether embryo biopsy will be harmful to the development of the embryo has been addressed by the geneticist who was interviewed. He dismissed such assumption on the ground that when PGD and HLA typing are performed, cells are extracted for testing from the trophectoderm and not inner cell mass. It is the inner cell mass that will become the foetus, but the trophectoderm will only turn into placenta. All the medical practitioners interviewed opined that an HSC donation is not highly risky for the donor. There is almost an absence of risk in the collection of umbilical cord blood, in contrast to the harvest of bone marrow as the latter involves general anaesthesia. However, such risk of the HSC donation was said to be manageable. The success of an HSC transplantation will ultimately depend on a number of factors such as the age, health status and the nature of disease suffered by the recipient. In sum, the conception of saviour siblings is considered acceptable since its benefit, namely, the potential to cure another child through HSC transplantation, is likely to outweigh its possible risk from the embryo biopsy and HSC donation. The views of the medical practitioners who participated in the interviews were very similar to those medical views expressed in the academic literature on this point. Obviously, the response of this category of participants was based on their medical expertise and experience in the related aspects.

Risk of Psychological Harm

Only one of the medical practitioners expressed concern on the possibility of psychological harm suffered by the saviour sibling if the HSC transplantation fails. However, four other medical practitioners disagreed with such view. One of them justified that there is no empirical evidence which supports the argument that a saviour sibling may suffer psychological harm. It is equally possible that a saviour sibling would experience gratification if the HSC transplantation is successful and the ailing sibling is cured. In other words, speculation on the possible psychological harm alone is not sufficient to render the conception of saviour siblings an unacceptable practice. Nevertheless, it is important to provide genetic counselling to the prospective parents before the procedures to conceive a saviour sibling are undertaken. None of the patients or parents of patients who were interviewed raised the issue of psychological harm when they discussed the acceptability of the conception of saviour siblings. Despite the different responses from the two categories of participants, the concern raised about the potential psychological harm of saviour siblings and the dismissal of such argument on the ground of lack of empirical evidence are very close to the debate in the academic literature.

Instrumentalisation of the Saviour Siblings

Interestingly, most of the participants did not regard the conception of saviour siblings as ‘instrumentalising’ the future child. To them, it is an act done with good intention, with the noble purpose of curing the ailing sibling. The medical practitioners further acknowledged that HSC donation among siblings is widely accepted in Malaysia. This is particularly because the Malaysian society is more collectivistic, in which the relationship between the family members is strong and intimate. Therefore, emphasis is likely to be placed on the collective interest of the family rather than the individual child (saviour sibling). Moreover, a minor donor in Malaysia is allowed to donate regenerative tissue (Medical Development Division 2007).

A saviour sibling can only be regarded as being ‘instrumentalised’ if he is conceived solely as an HSC donor for the sick sibling and then being abandoned by the parents after the HSC donation. One of the patients interviewed found that it is quite impossible for parents to abandon a donor child, whom they have conceived through such demanding process. This view mirrored the published literature which contended that parents who went such length to conceive a saviour sibling will most likely love and value the resulting child for his own sake (Devolder 2005; Pennings et al. 2002). Nevertheless, it is important to have measures that avoid exploitation of the saviour siblings and thereby safeguard their welfare and interest.

It should be highlighted that the participants’ stance that saviour siblings are not instrumentalised mapped well with the academic literature. However, unlike the academic literature which displays philosophical or deontological arguments of ‘means-end’ imperative, the participants in this research were influenced by the cultural and social values in Malaysia where prominence is given to the interest and needs of the family rather than oneself.

Economic Concern

Although not specifically discussed in the literature on saviour siblings, previous literature pointed out that embryo screening technology may lead to distributive justice concerns due to its relatively high costs (de Melo-Martin 2019). The parents of patients and the patients who were interviewed expressed their concern on the affordability and access to the procedures as these issues directly affect them. The reproductive services provided by the public health system in Malaysia are quite limited. Only some selected government hospitals offer IVF to infertile couples. Due to the high operational costs, PGD is not available in the government hospitals. This would mean that the whole process of the conception of a saviour sibling which involves coordination of the gynaecologist, embryologist, geneticist, genetic counsellor and haematologist is likely to take place in private medical practice. A fee for service is charged for the procedures such as IVF, PGD, HLA typing and HSC transplantation. Therefore, the parents of patients and the patients who were interviewed were worried that they could not afford the expensive fees for those procedures even if they were offered such a choice. One of them pointed out that if most of the affected families cannot access such procedures due to the high fees, this implies that the procedures could only serve the rich.

This economic problem is compounded by the fact that there is very limited financing source to undergo such procedures. Since IVF, PGD and HLA typing are not meant to preserve the health of the insured or the prospective mother, the charges of these procedures are not covered by the private health insurance. Although members of the employee provident fund (EPF) can withdraw savings from Account 2 to finance their medical expenses, this financial source is quite limited in the context of the conception of saviour siblings. This is because EPF withdrawal for medical expenses must comply with the list of approved critical illness or for the purpose of fertility treatment (Employee Provident Fund 2020). Since an HSC transplantation is expressly stated in the list of approved critical illness, only medical expenses incurred for the HSC transplantation can be financed by EPF withdrawal, unless one of the parents is also receiving the fertility treatment. EPF savings cannot be withdrawn for IVF if the procedure is not related to fertility treatment. It also cannot be withdrawn to finance the costs of PGD and HLA typing process. The lack of financing resources may result in some who cannot afford to opt for conception of saviour sibling.

It is observed that the responses of the medical practitioners and the scientist, to a large extent, mirrored the discussion in the academic literature on the issues of the potential physical and psychological harm. Most of them believed that the risk or harm caused by the procedures, if any, is manageable and should not deter the practice of conception of saviour siblings. Such consistency is anticipated because the medical practitioners and the scientist interviewed weighed between the benefits and risks of using PGD and HLA typing or HLA typing alone to conceive saviour siblings based on their medical expertise, knowledge and experience. The parents of patients and patients themselves paid very little attention to the ethical issues of the conception of saviour siblings. They were more concerned with matters that would directly affect them, namely, the potential physical harm associated with the technology and the costs of the procedures. Their concern on the risk of physical harm was similar to the discussion in the academic literature. However, their economic concern was rarely addressed by the current literature on saviour siblings, although there were other literatures highlighting the concerns of distributive justice caused by the costly embryo screening technology. Notably, the perspectives of the parents of patients and patients themselves were influenced by their role as parents or their personal experience. Due to the Malaysian culture which upholds collectivism rather than individualism (Hofstede et al. 2010),3 HSC donation among siblings is an acceptable norm. Therefore, none of the participants raised the issue that the parents would be in a conflicted position in deciding whether to allow one child to be the HSC donor for another ailing child in the family. Based on the same reason, they also did not consider the HSC donation by a saviour sibling as an instrumentalisation of the child. The collective interest of the family prevails over the individual interest of the child donor in the context of an Asian family. Therefore, the participants came to the same conclusion that there is no instrumentalisation of the saviour sibling. However, unlike the academic literature which argued on the meaning of Kant’s ‘means-end’ imperative, the participants’ views reflected the culture and values of a typical Asian family.

Conclusion

Conceiving a saviour sibling to be an HSC donor for a sick child in the family is an ethically contentious practice. The current academic literature appears to take a liberal Western viewpoint and mainly supports such practice. Interestingly, despite the different social and cultural background of the Malaysian society, the majority of the selected local stakeholders who were interviewed supported the conception of saviour siblings. It is acknowledged that certain stakeholders come with certain perceptions or interests. However, by and large, their concerns are consistent with that discussed in the academic literature. There remains a need for more research into the views of religious leaders, given the part that religion plays in this multi-religious country and the need to ascertain greater insights into the views of the community.

As safety of the use of the technology and the economic implication of the practice were the two predominant concerns of the participants, clear legislation should be enacted to prevent any misuse of the technology and to safeguard the interest of the potential users as well as the future child. There should also be some measures to avoid any widening of social disparities between those families which can afford to access the service and those which are incapable of doing so.

Data Availability

Data supporting the findings of this study are available within the article.

Declarations

Ethical Approval

Ethical approval by University of Malaya Research Ethics Committee (UMREC) and the Medical Research and Ethics Committee (MREC), Ministry of Health Malaysia.

Competing Interests

The authors declare that they have no competing interests.