The Ethical Perceptions of Selected Stakeholders on the Practice of Saviour Siblings in Malaysia

The creation of saviour siblings using the embryo selection technologies, namely, preimplantation genetic diagnosis (PGD) coupled with HLA typing or HLA typing as a sole clinical procedure, has sparked ethical debates on whether the practice is acceptable. The resulting child from the use of these technologies is dubbed a ‘saviour sibling’ as the child can potentially act as a compatible donor for an existing ailing sibling who needs an haemopoietic stem cell (HSC) transplantation. Previous literature identified several ethical arguments such as the instrumentalisation of the future child, the risk of physical and psychological harm to the saviour sibling, and the conflict of interests the parents face when they need to decide whether to consent to an HSC transplantation when the donor and recipient are their own children. However, such views are mainly held by Western scholars. It would be interesting to ascertain the views of local stakeholders to determine whether they mirror or are in keeping or how they map against the arguments in the previous literature. This article aims to explore the perceptions of selected participants on the acceptability of this practice in the Malaysian context, if the technologies are used for this purpose in this country. Semi-structured interviews were conducted with six medical practitioners and the scientist, seven patients with haematological conditions and four parents of patients in Malaysia. Their perceptions were then used to compare against the previous literature on the ethics of the creation of saviour siblings. Findings reveal that the participants were influenced by their expertise, their own experience and their role as parents. The views of the majority of the medical practitioners and the scientist were more consistent with the previous literature but the perceptions of the patients and the parents of patients showed otherwise. 2 The ethical views of these participants are relevant because PGD and HLA typing technologies are available in Malaysia and there have been attempts to conceive saviour siblings using these technologies. However, whether this practice is permitted in Malaysia is not clearly addressed in the Malaysian Medical Council’s Guideline on Assisted Reproduction. It is hoped that the findings of the interviews will inform the policy maker in adopting a clearer position on the permissibility of the practice of saviour siblings