Clodegh Aherne argues why it is important that we look into the nature of saviour siblings and asks us to consider the psychological as well as the physical impacts on donor-children – is it really worth it?
A Time magazine article from 1991 captures the fraught nature of the debate surrounding saviour siblings, dubbing the practice as “on the side of the angels” while the “devilish ghost of Dr Mengele” hovers in the wings. Saviour siblings are children who are able to provide stem cells, blood, bone marrow, or organs for their seriously ill siblings. The ethics of this practice are murky, with varying degrees of ethical acceptability depending on the demands made of the donor child.
It is my position that whole organ donation, such as of kidneys, lungs, or liver by saviour siblings is not ethically defensible, but that tissue donations, such as blood or bone marrow, which involve lower risk and lower levels of harm to the donor child, can be justified.
This phenomenon has caught the cultural and public imagination for the past three decades in the media, most notably in Jodi Picoult’s novel and the 2009 film, My Sister’s Keeper. In Picoult’s story, as in the most high-profile cases, a child is conceived specifically for this purpose, to act as a therapeutic tool for their older sibling through preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF).
The practice of repeated donations of organs, blood, bone marrow, and tissue throughout the child’s life, as depicted in Picoult’s film, induces a visceral reaction among the public and gives rise to an “ick factor”, calling up images of baby farming and organ harvesting.
In reality, saviour siblings usually make relatively harmless tissue donations of blood or bone marrow.
There may even only be a need to harvest stem cells from their umbilical cord, which poses no risk to the donor sibling. Harvesting bone marrow, though subject to common surgical risks associated with general anaesthesia and infection, is generally considered a low-risk procedure.
Solid organ donation is a far more extreme procedure.
A live liver transplant, for example, which may be necessary to treat children with metabolic diseases such as Tay-Sachs or Gaucher disease, involves part of the liver, either the right or left lobe, being removed from the donor for transplantation. The risks of such a procedure for the donor include infection, bleeding, bile leaks, and blood clots, with the risk of the donor developing liver failure increasing with donation of a larger volume of liver, such as the right liver lobe.
To impose these risks upon a child incapable of providing informed consent cannot be ethically justified in the way that blood or bone marrow donation can be. For lower-risk procedures involving a minor infringement of bodily autonomy, it is justifiable that proxy consent from the parents is sufficient. In the case of living liver donations in Scotland, the donor must be aged over 16 years, reflecting the impermissibility of such a donation applying to saviour siblings.
Another significant ethical concern is the potential negative psychological effects on the donor child.
They may suffer a lack of self-confidence as they begin to understand that they were created to provide treatment for their older sibling and may bear significant burdens if the treatment using their biological material fails. Imposing these potentially harmful psychological impacts, alongside harmful physical effects, on a child is oppressive and cannot be outweighed by the parents’ interests in treating the recipient sibling.
The precarious balance between the need to procure treatment for a sick child and the welfare of a potential donor must be bracketed by comprehensive regulation in order to ensure that the best interests of both children are met. On this basis, I propose greater public debate, precipitating a formal regulatory framework in the UK, and a dedicated authority, parallel to the HFEA, to oversee regulation and to put safeguards in place to protect the donor children. In particular, focused consideration needs to be given to the potential psychological impacts on the donor child, and the enduring emotional and physical consequences of both donation and transplantation must be borne in mind. In any event, this is an area which demands statutory consideration, as medical sciences develop, and we try to navigate a world where we have the opportunity, but also the potential obligation, to act as a saviour to another.
Clodagh Aherne (she/her) is a 23-year-old Irish student, currently studying a Masters in Medical Law and Ethics at the University of Edinburgh.
Hello! I am also trying to do a study on savior siblings but have yet to find an actual case where a child was used for organ transplants. Do you know of any? Thanks!
Hi Emeline, thank you for your comment! I will get in touch with Clodagh to see if she has an answer to your question.
– Anna