Ajitesh Arya, a second-year student at NALSAR University of Law, India, writes about the legal intricacies involved in the creation of Survivor Children...
Recently, Kavya Solanki of Gujarat, India has become the first-ever “Saviour Sibling” of India. She was conceived in order to provide bone marrow for her elder sibling, Abhijeet Solanki, suffering from the life-threatening disease Thalassemia.
Saviour children are the children created through the Assisted Reproductive Techniques so that they are genetically compatible with the other sibling suffering from a life-threatening genetic disease. To conceive a saviour child, a process called, Pre-implantation Genetic Diagnosis (“PGD”) is used. Under PGD, embryos are created, and then the cells are biopsied, to screen the embryos for genetic diseases. The genetic compatibility with the elder sibling is checked through HLA typing. Finally, a genetically healthy and compatible embryo is implanted into the uterus through In-Vitro Fertilization (“IVF”). Adam Nash was the first-ever Saviour Sibling.
With the emergence of the Saviour Sibling treatment in different parts of the world, a lot of ethical concerns also came up. This article aims at looking at the legal as well as the ethical issues concerning such children in the Indian context.
The PGD technique used for the creation of the Saviour Child has been exposed to many ethical critiques across the globe as the technique has the potential to be misused for the creation of designer babies. In the Indian context, the first question that arises is about the legality of the use of PGD for the creation of a Saviour Child. The justification for the use of PGD can be located in Section 4(3)(iv) of the Pre-Conception and Pre-Natal Diagnostic Techniques Act, 1994 (“PCPNDT Act”). Although an argument can be made that, the ulterior motive is to create a compatible sibling and not to test the embryo for the genetic disease. A similar concern came before the Court of Appeals in R (Quintavalle) v. Human Fertilization and Embryology Authority, wherein it was held that although the ulterior motive for using PGD is different, but it also ensures the conception of a child who is tested and thereby shielded from genetic diseases and such effect should not be overlooked. Hence, parallelly in the Indian context as well, the use of PGD for the creation of Saviour Children may be justified in law.
Another issue that might shadow the Saviour Sibling treatment in countries like India is that of sex selection. In countries like India, where discrimination between a male and a female child still prevails in the society, there is a likelihood that a female child shall only be conceived to act as a saviour sibling for their elder sibling. Although the PCPNDT Act prohibits sex-selection in Section 3A and empowers the appropriate authorities appointed thereunder to carry out the regular inspections of all the clinics, hospitals, etc. dealing in genetics and pregnancy, but as per the 12th Common Review Mission Report, the implementation of the act appears abysmal. As per the report, the authorities are not carrying out the inspection properly, and therefore, the inspection is limited to the study of the paperwork only. The fact that a particular sex is being selected as the saviour child can easily be shadowed and shall never find a place on official papers dealing with PGD and IVF. This lacuna potentially endangers a female child whose existence might be reduced to a mere health tool. In a general sense as well, reducing the inspection to a level of paperwork may lead to covering up of actual sex-selection behind the veils of genetic treatment.
Once the intended Saviour Child is born, a new set of ethical dilemmas arises. Generally, non-maleficence is considered to be moral value and parents are societally expected to act with the best interest of their children in mind. But when dealing with the Saviour Children, the whole new debate around the idea of non-maleficence arises. A Saviour Child, who was born healthy, may have to suffer certain pain during the treatment of the elder sibling. The use of a Saviour Child may vary from the harmless donation of the umbilical cord to a comparatively painful donation of bone marrow. Is it ethical and legal to subject a healthy born child to pain? As per the Rule 5(3)(g) of the Transplantation of the Human Organs and Tissues Rules, 2014, a minor can only donate tissues or organs in the exceptional circumstances with the prior permission of the appropriate authorities. Interestingly, Section 13 of the Transplantation of the Human Organs Act, 1994 doesn’t provide for the appointment of the doctors who could decide on the transplantation issues as the appropriate authorities. The medical experts only find their position in the Advisory Council, whose opinion does not bind the authority.
Even if we assume that the appropriate authority manages to decide for the best health interest of the Saviour Child, certain dilemmas remain unanswered. Even for a totally harmless donation, the autonomy of the Saviour Children is to be compromised. In fact, the same is compromised even before they are born by assigning them a purpose, which may potentially harm them. This further leads to concerns about the psychological well-being of the Child and the interactions between the parents and the children. The possibilities of the parents seeing the Saviour Sibling as a mere medical tool or medicine or them being biased toward the other child cannot be overlooked. The fact of being a saviour child may also deal a blow to the confidence of such children. On the bright side, there is also a possibility of Saviour Child having a sense of pride for having saved a life.
The article has tried to explore the ethical and legal concerns pertaining to the Saviour Sibling treatment at both pre-conception and postnatal stages in the Indian context. As renowned ethics philosopher, Jonathan Glover had said that one has to give a very powerful reason to resist the means by which a child’s life can be saved, the aim of the article is not to seek a total ban on the Saviour Sibling treatment but rather to put forward the need of proper and stringent regulations and laws. It is also expected that all the alternative possibilities be explored before even considering the Saviour Child treatment as it involves serious implications on the life of the unborn.
Ajitesh Arya is a second-year law student at NALSAR University of Law, Hyderabad, India. He has a keen interest in Criminal Law, Aviation Law, Bioethics and IPR.
Suggested citation: Ajitesh Arya, Who Saves the Saviour Child?, JURIST – Student Commentary, December 14, 2020 https://www.jurist.org/commentary/2020/12/ajitesh-arya-saviour-children-india/.
This article was prepared for publication by Khushali Mahajan, a JURIST staff editor. Please direct any questions or comments to her at firstname.lastname@example.org
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