Conception of Saviour Siblings: Religious Views in Malaysia

Abstract

The advancement of human reproductive technology has made it possible for parents with a child affected by a haematological disorder to select and bring into being, a prospective child who can act as a matched stem cell donor. This can be done through the use of preimplantation genetic diagnosis (PGD) coupled with human leukocyte antigen (HLA) typing (PGD-HLA typing), or HLA tying as a standalone procedure, where a healthy embryo, which is an HLA match to the existing sick sibling, is chosen for implantation. The creation of such a sibling (saviour sibling) is normally taken as a last resort when there is no related or unrelated matched donor. While the conception of a saviour sibling may serve as a reliable and realistic treatment option for the ailing child, it also poses new moral questions that challenge a religiously pluralistic society such as Malaysia. The use of PGD-HLA typing may be controversial as it involves creating a life to save a life, selection of compatible human embryos and destruction of the unselected embryos. At present, there is no legal framework regulating the conception of saviour siblings. The development of ethically sound and appropriate local laws and policies should consider the views of religious communities, especially when it involves a controversial subject such as the conception of saviour siblings. This article seeks to explore the perceptions of religious scholars and representatives of the major religions professed and practised in Malaysia, namely Islam, Buddhism, Christianity and Hinduism, through qualitative interviews.

Introduction

The advancement of human reproductive technology has made it possible for parents with a child affected by a haematological disorder to select and bring into being, a prospective child who can act as a matched stem cell donor. Using preimplantation genetic diagnosis (PGD) coupled with human leukocyte antigen (HLA) typing (PGD-HLA typing), or HLA tying as a sole clinical procedure, a healthy embryo created by in vitro fertilisation (IVF) which is also an HLA match to the existing sick sibling can be selected for implantation. The child conceived in this manner is normally referred to as the ‘saviour sibling’. This source of stem cell donors is in almost all instances, taken as a last resort, when there is no related or unrelated matched donor.

The technology needed to create a saviour sibling is readily available in Malaysia. However, at present fertility centres in Malaysia do not appear to provide such a service. The only instance of such a service is the “Saviour sibling programme for monogenic disorders with definitive high-resolution HLA typing”, offered by Alpha IVF & Women’s Specialists (KL) which announced it in November 2019 (Healthcare Today 2019). There is no specific legal framework governing assisted reproductive technology in Malaysia. Clause 14 of the Guideline of the Malaysian Medical Council1 on Assisted Reproduction (the MMC Guideline on Assisted Reproduction) provides for the acceptable use of PGD, namely to avoid transmission of genetic disorder and sex-linked diseases to the prospective child. It also suggests that the application of PGD should be confined to serious and life-threatening diseases (Malaysian Medical Council 2006). However, the guideline is silent on the specific issue of the conception of saviour siblings. Nevertheless, if the guideline is construed broadly in line with its guiding principles, it would appear that the conception of saviour siblings would be permissible (Kuek et al. 2019).

While the conception of a saviour sibling may be legally permitted and serve as a reliable and realistic treatment option for the ailing child who needs a haematopoietic stem cell (HSC) transplantation, it also poses new moral questions that challenge a religiously pluralistic society such as Malaysia. The use of PGD-HLA typing may be controversial as it involves creating a life to save a life, selection of compatible human embryos and destruction of the unselected embryos.

Very often, religion will influence or guide societal responses and provide a certain degree of legitimacy for any new kind of biotechnology. The religious elites or leaders are likely to exert influence on members of society through their views on the issues of reproductive genetic technology (Evans 2006; Olesen et al. 2016). The views of local religious leaders are particularly relevant and will have an impact of the societal acceptance of new advances in science and technology. This is because the adherents of a specific religion will draw on the views of their religious leaders when they consider public policy issues arising from the reproductive genetic technology.

Malaysia is a multi-religious society. Islam was the most widely professed religion in this country with 63.5% of the population embracing it. This was followed by Buddhism (18.7%), Christianity (9.1%) and Hinduism (6.1%) (Department of Statistics Malaysia 2022). The development of ethically sound and appropriate local laws and policies should consider the views of religious communities, especially when it involves a controversial subject such as the conception of saviour siblings. This is because laws and policies should reflect the widely accepted norms of the society or values found to be common among different communities. In this context, ‘religion’ means “a body of relatively fixed beliefs institutionalised in a faith community” (Brody and Macdonald 2013). ‘Bioethics’ refers to “ethical issues in health care and the biological sciences”. The insights and moral framework offered by religion will enrich bioethics and may provide intellectual resources to address the bioethical challenges or moral concerns. Therefore, the participation of religious voices in the biomedical discourse is crucial.

The next section of this article begins with the aim of this study and the methodology adopted. It then discusses the religious perceptions of the conception of saviour siblings based on the existing literature and the views of the religious scholars or leaders who were interviewed in this study. The last section concludes the religious positions on the conception of saviour siblings in Malaysia.

Study Aim and Methodology

This article seeks to explore the religious perception of conceiving saviour siblings in Malaysia. The contents of the existing literature relevant to this issue were studied and analysed. Views were then sought from eight purposefully selected religious scholars and leaders of four main religions in Malaysia, through semi-structured interviews. These four religions are Islam, Buddhism, Christianity (including the Catholic church) and Hinduism, with two participants from each of these religions. The participants were chosen using purposive sampling. They are from the Department of Islamic Development Malaysia (Jabatan Kemajuan Islam Malaysia, or JAKIM), Selangor Mufti Department, Malaysia Buddhist Association, Buddhist Missionary Society Malaysia, Catholic Research Centre, Kairos Research Centre and Malaysia Hindu Sangam. The list of the participants and their background is summarised in Table 1.

Table 1.

Summary of list of participants

Participant	Background	Organisation
P1	Religious scholar/Expert in Islamic Jurisprudence	Department of Islamic Development Malaysia (JAKIM)
P2	Assistant of the Head of Mufti	Selangor Mufti Department
P3	Abbess	Malaysian Buddhist Association
P4	President	Buddhist Missionary Society Malaysia
P5	Director/Priest/Religious Scholar	Catholic Research Centre
P6	Research Director/Christian Theologian	Kairos Research Centre
P7	President	Malaysia Hindu Sangam
P8	Former Deputy President (also a medical practitioner referred by Malaysia Hindu Sangam)	Malaysia Hindu Sangam

The criteria for recruiting the participants were based on their background, knowledge, whether they are information-rich and the nature of this study. As the participants were mainly referring to their respective religious doctrines, the information obtained did not differ much between the participants of the same religion and the literature. Therefore, the sample size of this study was fixed at eight purposefully selected religious scholars and leaders. The data collected is considered adequate as the increase of sample size or the collection of new data may not contribute to additional relevant information. One-to-one interviews were conducted between September 2017 and January 2018. Each of the interview lasted between 40 and 90 minutes. Ethical approval to conduct this research was obtained from the University of Malaya Research Ethics Committee (UMREC) before the participants were approached.

All the participants gave their written informed consent for the interviews and each of them has signed the consent form. The interviews were audio-recorded and subsequently transcribed. Segments of data in the interview transcripts which were relevant to the religious perceptions on the conception of saviour siblings were coded. The codes with the meaningful patterns were sorted into themes. During the thematic analysis, four themes emerged and this will be discussed under the “findings of the interviews”.

Content Analysis of the Existing Literature

Religious perceptions may in some instances have a far-reaching impact on how certain segments of society view new and emerging biotechnologies. This is particularly true of technologies such as those concerned with the conception of saviour siblings that involve the selection and destruction of early embryos,2 in which healthy and HLA compatible embryos are selected while the unselected embryos are destroyed. The use of technology in this context raises highly contentious issues and questions relating to when life begins and when it should matter morally. Therefore, it is vital to consider religious perspectives and their possible impact on societal acceptance of such technologies when framing policy and governance structures. The contents of the existing literature relevant to this aspect will be considered in this section.

Islam

Islam recognises that human beings are biological and intellectual in nature. The biological life commences upon fertilisation but the ensoulment signifies the inception of human life (Yaseen 1990). The Holy Qur’an, being the primary source of Islamic law, describes how an embryo develops. It starts from nutfa (sperm and egg), followed by alaqa (clot), mudgha (fleshy lump), bones and flesh (Surah 23: 12–14). After the physical body of a man is formed, there is ensoulment or the breathing of the spirit by Allah (Surah 32: 7–9 and Surah 38: 71–72) which signifies the commencement of the human life. However, when the ensoulment or the attainment of moral personhood occurs is not clearly stated in the Holy Qur’an.

According to the hadith or tradition narrated by Abdullah bin Mas’ud, the three stages of nutfa (sperm and egg), alaqa (clot) and mudgha (fleshy lump) are 40 days each continuously, before the angel breathes the soul into the embryo (Sahih Bukhari 2009). There is another hadith narrated by Hudhaifa bin Usaid (Hudhayfa Ibn Usayd), in which the zygote was said to be established in the womb for 40 nights before the angel visits (Translation of Sahih Muslim 2005). Referring to the tradition of Mas’ud, jurists generally inferred that ensoulment occurs approximately 120 days after conception. However, some scholars interpreted both hadiths as ensoulment takes place after the 40th day of conception. They considered the formation of embryo, clot and fleshy lump as occurring within the same period of time, namely 40 days, rather than having the same length of time for each continuous stage (Aksoy 2005). It is noteworthy that the MMC Guideline on Assisted Reproduction stated that Islam interprets a foetus as being ensouled at 120 days (Malaysian Medical Council 2006).

The bestowal of a soul makes the embryo a living individual or human being with the full rights. Before the ensoulment, the embryo is not a full-fledged human being and merely has limited rights (Al–Matary and Ali 2014). Since the PGD and HLA typing will be performed on a 3- or 5-day old embryo, it means that the embryo would not have attained moral personhood according to Islam. Therefore, the destruction of unselected embryos which is part of the process of the conception of saviour siblings may not be objected by Islam especially when this is weighed against the purpose of saving the life of the sick child. The existing academic literature suggests that the conception of saviour siblings is acceptable in Islam and can be justified through two Shariah principles governing medicine, which are “useful matters are permissible” and “protection of human life” (Al Aqeel 2007). It benefits the affected child and the family, but they should be counselled properly (Sultan and Harper 2012). There were scholars who felt that Islam permits the conception of saviour sibling for donation of umbilical cord blood but not other materials or organ that requires consent of the donor (Zahraa and Shafie 2006).

Buddhism

As compared with Islam which believes that moral personhood is only attained upon ensoulment at a later stage after the conception, the Theravada3 tradition or the mainstream position of Buddhism is that an individual human life commences at the point of conception (Keown 2005). The Buddhist doctrine of rebirth regards a conception as reconception in which the embryo is a continuing entity of a recently deceased individual through the union of the spirit of the deceased person with the biological substrate (Keown 1998). The transmigration of consciousness occurs at the point of conception (Hughes 1998).

Buddhists have moral duties found in the Five Precepts.4 The first precept is the prohibition of taking life or causing harm to anything with breath. Apart from the Five Precepts which are applicable to laity, there are monastic rules that must be observed by the monks and nuns. According to the third parajika or monastic rule in the monastic literature, Vinaya Pitaka, a monk who intentionally deprives the life of a human being, even to the extent of destroying an embryo or causing an abortion, is no longer a follower of the Buddha (Cozort and Shields 2018; Keown 2005; Harvey 2000). The first precept and the monastic rule of prohibiting the destruction of human life demonstrate the Buddhist virtues such as non-harming or non-injury (ahimsa) and compassion (karuna). Therefore, any deprivation of life of a human being from the point of conception should be avoided, in spite of the quality of the motive and the good consequence of the act (Keown 1995). Applying this to the case of saviour sibling, generating human embryos with the knowledge that the incompatible or unselected embryos will be destroyed may breach the first precept of Buddhism, which is the prohibition on taking life.

In contrast, there is also Buddhist’s liberal argument which is based on five aggregates (skandhas)5 or characteristics that define an individual human being. The liberal proponents argued that an embryo may not embody all the five aggregates. Characteristics such as feelings and sensation, as well as consciousness, were said to be acquired gradually and only exist at a later stage in pregnancy. In the absence of consciousness and capacity to suffer, the embryo may not have a life in its own right but mere biological basis of life (Cozort and Shields 2018). Furthermore, the conception of saviour siblings demonstrates the Buddhist virtual qualities such as generosity (dana), compassion and benevolence (metta).

Therefore, destroying incompatible or unselected embryos in the process of the conception of saviour sibling may not be morally abhorrent to the liberal Buddhists who do not consider such act as depriving human life or violating the first precept of Buddhism.

Christianity

The Catholic Church believes that a human life begins from conception. It is sacred, inviolable, must be respected unconditionally and protected absolutely at any stage of its existence. The embryo is conferred full moral status and deserves the same level of respect and protection as any adult human. Therefore, abortion, infanticide and euthanasia are reprehensible (John Paul II 1995, 2000). PGD which involves qualitative selection and consequent destruction of embryos is condemned as it demonstrates a eugenic mentality that devalues human lives affected by anomalies (Congregation for the Doctrine of the Faith 2008). Conceiving a child to save another person is instrumentalising the child and disrespectful of the child’s dignity (Fournier 2011).

However, the existing literature reveals that the protestant Christian scholars hold different views on the issue of moral status of the human embryo. One view is that the embryo has some value or special status but not the full moral status as a full-fledged human adult. The nascent human being should be granted different degrees of protection according to its stage of development. Proponents of this view normally referred to the variable penalties for abortion grounded on the gestational age of the foetus and Aristotle’s theory of delayed animation or ensoulment, which was adopted by St Thomas Aquinas (Dunstan 1984). Another contrasting view is that the human life is sacred and the personhood is present from conception. This can be supported by the texts in the Holy Bible in which God called His people from the time they were conceived in the womb (Jeremiah 1:5 and Isaiah 49:1) and that God formed human embryo in the womb (Psalm 139: 13–16). An embryo deserves respect and it should not be deliberately destroyed (Jones 2005a, b). The proponents of this view object the conception of saviour sibling as it commodifies the child to serve utilitarian ends (National Council of Churches of Singapore 2005). While Christians should try their best to heal and help, conceiving a saviour sibling to save an ill child would be stretching this too far (Berry and Engel 2005).

Hinduism

As for Hinduism, there are diverse views on when the ensoulment takes place. The orthodox view as expressed in Caraka Samhita is that ensoulment occurs at the time of conception. However, the minor Hindu tradition as reflected in Garbha Upanisad believes that ensoulment only happens at the seventh month of conception (Lipner 1989). Lipner found that the classical texts generally recognises the unborn as having human personhood and condemns abortion except in extreme circumstances where the mother’s life is in danger (Lipner 1989).

Two important tenets of Hinduism are reincarnation and karma. Reincarnation involves transmigration of the soul (atman) from the previous life to the next life. The death and rebirth of a being may continue indefinitely until it is liberated through enlightenment (Lipner 1989). Karma refers to the moral cause and effect of actions and thoughts. One will reap the positive or negative fruit of his or her action. Hinduism commits to the protection against harm or ahimsa. Therefore, taking or destroying a life including a foetal life will prima facie violate the principle of ahimsa and has its karmic consequences. However, the commitment to ahimsa and sanctity of life does not mean that Hinduism only prescribes to one course of action. If an act is meant for the societal good such as finding cures for certain diseases, it may be justified although it may involve the destruction of foetal life (Bhattacharyya 2006). Applying this to the conception of saviour siblings, it may be contended that the conception of saviour siblings may be acceptable by Hinduism since it is intended to save the affected sibling and contribute to the well-being of the society.

Findings of the Interviews

After the analysis of the academic literature on the religious perspectives on the conception of saviour siblings, interviews were conducted with eight respondents who are either the religious scholar or leaders from the four main religions in Malaysia. Thematic analysis of the interviews revealed four themes. The first theme is “moral status of the embryo”, followed by “protection against harm”, “intention of conceiving saviour siblings” and finally “social justice”. As expected, the findings of the interviews do not depart much from the academic literature as they were based on the respective religious doctrines.

Moral Status of the Embryo

The acceptability of the practice of the conception of saviour siblings by different religions is very much influenced by the religious views of the moral status of the embryo. If an embryo is considered to be embodying a human life, the conception of saviour siblings will raise serious moral concerns of harming human lives as the process involves discarding of the unselected embryos. P1 and P2 were of the view that Islam permits the conception of saviour siblings. The main reason was that Muslims believe that the 3- or 5-day old embryo conceived for the purpose of creating saviour sibling has not attained personhood since it has not been ensouled at that stage. P1 referred to the hadith by Abdullah bin Mas’ud, in which ensoulment is said to take place 120 days after the conception and that indicates the commencement of a human life. In other words, even if the surplus or unselected preimplanted embryos are disposed of, that does not amount to an act of murder. Nevertheless, due to the sensitivity of the issue, P1 suggested that any disposal of embryos must be handled with caution and with the informed consent of the couple.

P3 and P4 also did not oppose the conception of saviour siblings. P3 pointed out that the type of Buddhist school of thought that a person holds will determine the religious position taken on the conception of saviour siblings. The most common view or the mainstream position is that human life starts at the point of conception. Therefore, disposal of embryos which are affected or not HLA-matched would have infringed the first precept of causing harm to life. It follows that the conception of saviour siblings will be prohibited by this mainstream thought.

In contrast, the more liberal school of thought believes that the presence of the five aggregates (skandhas) are crucial to constitute personhood. The five aggregates refer to the material form, feelings and sensations, perceptions, volitions and consciousness. A 3- or 5-day old embryo which is created to test against PGD and HLA compatibility would not have acquired all the five aggregates at once, and thus, it does not constitute a human life. In fact, this was the position taken by P4, who believes that an in vitro embryo falls short of the definition of a human life since it is yet to have manifested consciousness. As a result, the conception of saviour siblings may not be opposed although the process involves disposal of embryos which are not HLA-matched because it is not considered to be violating the first precept of non-harming of living creatures.

However, P5 and P6 expressed their views that Christianity disapproves the conception of saviour siblings. It was pointed out that IVF, which is a vital process for the application of PGD and HLA typing to conceive a saviour sibling by itself, is prohibited by the Catholic Church. This is because IVF is considered to be tampering with the natural order of procreation. In addition, Christianity believes that a human life commences at the time of conception. Life is sacrosanct. The disposal of incompatible embryos in the process of conceiving a saviour sibling violates the sanctity of life. This is especially when multiple embryos are created but only one or two compatible embryos are selected for transfer. Instead of affording protection for survival, the conception of saviour sibling exposes early embryos to the risk of destruction and termination of life. P5 also highlighted that life is not defined by its functionality and it should be protected at all stages including the stage of the early embryo.

P8 believes in delayed ensoulment, namely ensoulment only takes place about 3 to 4 months from the conception. However, this factor of moral status of embryo does not affect his stand of opposing the conception of saviour siblings. Instead, he was of the view that Hinduism does not support the conception of saviour siblings based on religious tenets such as karma and the principle of ahimsa or avoidance of harm, which will be explained in the next section of this article.

In summary, it is observed that the participants’ perceptions on the moral status of the embryo are consistent with the academic literature. Such perceptions have, to a large extent, led to their approval or objection of the conception of saviour siblings.

Protection against Harm

Generally, all the participants of the four religions agreed that there should be protection of human lives against harm. However, the same factor was used to either support or oppose the conception of saviour siblings.

P1 explained that whatever which brings benefits is allowed in Islam if it does not cause greater harm. A saviour sibling can help a sick child who needs an HSC transplantation but fails to find a matched donor. Thus, the conception of saviour siblings is beneficial as it saves the ailing child’s life provided that it does not cause greater harm to the saviour sibling as compared to the child who suffered from the serious disease. P2 affirmed this view. According to him, the Islamic law protects five aspects which are the religion, the human life, the mind, the progeny and the property. The conception of saviour siblings seeks to protect the life of the ailing child and the progeny. He also referred to the Holy Qur’an which provides that saving a life is akin to saving a whole community (Surah 5:32). Therefore, P1 and P2 opined that the conception of saviour sibling is not prohibited by Islam.

Buddhism emphasises on the principle of non-harming (ahimsa) of living creatures which includes human lives. P3 pointed out that whether the conception of saviour siblings contradicts this principle will depend on the particular Buddhist school of thought and its belief on the moral status of the embryo. For those who regard the commencement of human life at the time of fertilisation, the conception of saviour sibling would have violated the precept of taking of life when the incompatible embryos are not selected and subsequently discarded. On the contrary, for those who do not recognise the early embryo as a human life as it lacks consciousness, the conception of saviour sibling would not be viewed as harming human lives even if the process involves the disposal of incompatible embryos.

P7 and P8 also highlighted the principle of non-harming (ahimsa) in Hinduism. They explained that one should not cause suffering to the other person. By conceiving a saviour sibling to treat an existing sick child, the saviour sibling may be harmed if he is subject to multiple HSC donations after his birth. The sick child would be treated at the expense of the saviour sibling. The saviour sibling would be exposed to risks that may arise from the harvest of the stem cells.

P5 and P6 indicated that the conception of saviour siblings fails to afford protection to the vulnerable human lives at the initial stage. This is because the conception of saviour siblings involves abandonment of those incompatible embryos that embody lives. P6 added that the harm of destroying the incompatible embryos should be weighed against the risk faced by the ailing child. If the child’s medical condition is debilitating but still manageable and not life-threatening, then destruction of the lives embodied in the embryos should be avoided as the HSC transplantation is merely intended for improvement of quality of life. He further suggested that research to explore other means of treatment should be encouraged instead of relying on the conception of saviour sibling to provide a matched donor when there is no existing compatible donor.

Therefore, while all the four religions uphold the non-harming principle, they do not necessarily take the same stand on the acceptability of the conception of saviour siblings. For instance, both the Buddhism and Hinduism are guided by the principle of ahimsa. However, the Buddhist participants supported the conception of saviour sibling when they considered the non-harming principle together with the moral status of the embryo. In contrast, the Hindu participants objected to the conception of saviour sibling when they considered the non-harming principle and the karma.

Intention of Conceiving Saviour Siblings

The intention of conceiving saviour siblings is another relevant factor considered by the religious participants in determining the acceptability of the practice.

P1 used the analogy of a fatwa6 or ruling on therapeutic cloning and research on stem cell issued by the Fatwa Committee of Selangor, Malaysia, to explain the acceptability of the conception of saviour sibling. Under this fatwa, research on human embryo is prohibited if it is commercial in nature or is irrelevant to the health of the mother or foetus. However, embryonic research is permitted if it is conducted to identify possible genetic disorder and to select healthy embryo for implantation to the mother. The same fatwa also allows the harvest of a child’s stem cells for therapeutic purpose if it is done with the parents’ consent and the procedure does not cause harm to the child (Fatwa Committee of Selangor 2008; Jabatan Kemajuan Islam Malaysia 2015). Drawing from this analogy, the conception of saviour sibling would be acceptable in Islam as it is not premised on commercial purpose but for saving the life of an ailing child.

P3 and P4 felt that parents conceive a saviour child with good intention, noble purpose, out of compassion and loving kindness to save their sick child who needs the HSC transplantation or reduce the suffering of their sick child. The conception of saviour siblings is acceptable to Buddhism if there is a good intention to save another life and the saviour sibling is loved in the same manner as other child in the family. There is also a need to keep up with the scientific development, appreciate the modern technologies and put them to good use. Although a saviour sibling may have inferiority complex or feel unwanted by the parents, both the Buddhist participants believed that this can be overcome through proper communication between the parents and the child. Most importantly, the parents should love the child for his own sake.

P5 and P6 held a different position. They were concerned that a saviour sibling is conceived as a means to an end. Although the end is to save a sick child and this seems to be altruistic, it is ethically problematic to terminate lives embodied in the unselected embryos for the purpose of saving another life. A morally questionable act should not be approved no matter how noble the end appears to be. The welfare of the saviour sibling should be considered so as to avoid any potential exploitation in the name of saving another sibling by repeated demands for HSC donation each time the ailing sibling relapses. Both the participants also expressed their concern on the possible psychological impact on the saviour sibling, in which the child may feel unwanted or merely is born as a donor to the sick sibling. P5 pointed out that the act of embryo selection in the conception of saviour sibling reflects a worrying worldview, namely people may be getting less tolerant towards incompatible or imperfect embryos or lives as they appear to define life by its functionality.

P7 and P8 shared the same concerns. As a saviour sibling is intended to be born as a compatible donor for an existing sick child, the saviour sibing may be instrumentalised by being subject to multiple HSC donations. P7 and P8 also felt that Hinduism does not support the conception of saviour sibling based on the theory of karma (consequences in life caused by one’s action). They believe that everyone is accountable for his own karma. When a child suffers from the serious medical condition, it may be due to the saturation of karma. If the parents intend to evade the karma by resorting to the conception of saviour sibling, it would be futile as the karma would still manifest in other form in the future. Therefore, letting the karma exhaust itself in this life may be more desirable especially when the conception of saviour sibling is likely to lead to the suffering of another child, namely the saviour sibling himself.

Social Justice

The conception of saviour sibling involves IVF, PGD, HLA typing and HSC transplantation. At present, the coordination and implementation of all these procedures can only be available in private medical practice (Kuek et al. 2021). This would mean that a fee for service is charged on all these procedures. Among these procedures, it appears that only HSC transplantation can be financed by the employee provident fund (EPF). Withdraw of EPF to cover the expenses incurred for IVF is only limited for fertility treatment (Employee Provident Fund 2020) and not for other purpose such as the conception of saviour sibling. The private health insurance does not cover procedures such as IVF, PGD and HLA typing as these procedures are not intended to preserve the prospective mother’s health.

P5, P6 and P7 expressed their concerns about the issue of justice in the distribution of the PGD-HLA typing or HLA typing service to conceive a saviour sibling. This is because the high costs involved in the procedures will lead to unequal access by those who can afford the fee of private medical practice and those who do not have the means to pay. Furthermore, the saviour sibling programme will only be available in urban area. Those in the rural areas may not be able to access these procedures due to geographical reason. Such social disparities in terms of accessibility and affordability of the services to conceive a saviour sibling are undesirable.

Conclusion

The issue of the conception of saviour siblings has received diverse responses in the existing literature and the interviews with the different religious scholars or leaders. This is inevitable since each religion has its own theological doctrines or religious tradition. However, the responses from the religious scholars or leaders are generally consistent with the existing literature since they refer to the same religious teachings.

Conceiving saviour siblings appears to be acceptable to Islam and the liberal school of thought of Buddhism, when it is analysed from the perspective of the moral status of the embryo, the principles of avoidance of harm and the good intention of saving a life. However, it is objected by the Christian scholars and the separate school of thought of Buddhism on the ground of the moral status of the embryo and sanctity of life. The Christian scholars and the Hindu leaders also expressed their concerns that the conception of saviour sibling amounts to instrumentalisation of the child and it will lead to unequal access to such procedures depending on the financial ability of the parties. The Hindu leaders recognised that the conception of saviour siblings is morally problematic based on the principle of avoidance of harm and the belief in karma.

In formulating policy and regulation regarding reproductive technologies in a pluralistic society such as Malaysia, it is important to consider the views of the different religions. This could help to determine whether the policy and regulation would be feasible, acceptable and bring more benefits to the society.

Author Contribution

CYK was involved in data collection. Both authors contributed to the analysis and interpretation of data, the writing and editing of the manuscript.

Data Availability

Data supporting the findings of this study are included in this article.

Declarations

Ethical Approval

Ethical approval by University of Malaya Research Ethics Committee (UMREC).

Consent to Participate

Participants have given written informed consent by signing the consent forms.

Conflict of Interest

The authors declare no competing interests.