Saviour Siblings – Is it a boon or a bane?
Artificial Reproductive Technology (ART) has been a boon for infertile couples, who have been able to overcome their childlessness through various advanced ART techniques. Besides helping infertile couples, ART combined with preimplantation genetic testing also helps in identifying and eliminating the risk of transmission of several genetic diseases from the affected or carrier parents to their offspring. Another important and evolving therapeutic application of IVF combined with preimplantation genetic diagnosis (PGD) technique is to identify create “saviour embryos”, which will help in giving birth to babies commonly known as “saviour siblings”.
The possibility of “saviour sibling” has existed at a global level for last three decades, but it came under limelight in India very recently with the birth of one of the first Indian saviour siblings in Ahmedabad, with the procedure performed at Nova IVI Fertility centre. (Read this news here – https://timesofindia.indiatimes.com/city/ahmedabad/sibling-is-saviour-for-boy-suffering-from-thalassaemia/articleshow/68192388.cms)
So, what is a saviour baby or a saviour siblings? A saviour baby or asaviour sibling is “a child who is born to provide life-saving tissue to an existing childaffected with a fatal disease that can be best treated by tissue transplantation”. This has become possible by using IVF technique in conjunction with PGD to identify the embryo for implantation, which is HLA matched with the affected sibling. Therefore, the doctors are able to select an embryo for transfer which, if successfully implanted, will become a “saviour sibling” – a sibling capable of donating life-saving tissue to the affected child.
Patients with diseases like certain leukemias and anemias need bone marrow transplant (BMT) as part of their treatment. However, BMT requires a donor who is an immunological match to the receiving patient. In most of the cases, a biological sibling of the patient is the best possible donor, as the siblings would share the same gene pool. Typically, there are 4 possible combinations resulting from mix-and-match of genes coming from the two biological parents. Thus the siblings have a 1 in 4 chance of a HLA (human leucocyte antigen) match.
Though the practise of saviour siblings can be life saving for the affected children who would otherwise have died in absence of appropriate treatment, the practice is also debatable with several critics raising ethical concerns on the procedure ever since it first got reported.
The key concerns raised by the critics around the concept saviour siblings include :
Intention of the parents – critics argue that only intention in the creation of saviour siblings is to save the life of an existing child thus it involves ‘instrumentelizing’ the child that is created by bringing it into existence as a means to the end of saving another child’s life. However one can also argue that ultimately the parents of the saviour siblings will love the child for its own sake.
Psychological impact on the saviour sibling once she/he grows up – Any child born as a result of the need for a saviour sibling will grow up with the realization that they were conceived for the sake of making tissue for transplant; the circumstances of their conception may have psychological consequences. This will not be a concern if instead of creating saviour babies, we only consider creating “saviour embryos” where, if instrumentalization occurs, it occurs without any consequences for any particular person. Therefore in a certain way, creation of saviour embryos is arguably more ethical than the creation of saviour siblings.
Creation of designer babies – Critics argue that this concept may be misused by willing parents to create designer babies, and this could mean a gross misuse of this technique. This concern can only be addressed by carefully drafted and strictly followed regulations.
It is, therefore, very important to recognize that while this is a potentially lifesaving technique, it is also carries significant potential of misuse for selfish gains and for significant psychological impact on these babies. Thus, it is imperative that this procedure is regulated with strong regulations in order to prevent it’s abuse for non-clinical purposes and to protect the rights of the saviour siblings. This will help in striking the bright balance between the need to save a life and to save the rights of the saviour.
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