Saviour Siblings: Born For A Purpose
The fields of medicine and technology have made enormous strides in the past few decades, and, years ago, it would have been hard to even fathom the concept of a saviour child. Saviour siblings are children who are conceived through in vitro fertilisation (IVF) and chosen specifically as a genetic match to an already existing terminally ill child. The baby is born as a potential source of donor tissue, cells or even organs for the older sick sibling. While many might agree that there are certain circumstances in which conceiving a savior sibling is ethically defensible, others are focused on the real potential for abuse of this process. The tension between the two sides, and the arguments for both, place saviour children in an ethically gray area.
Years ago, I came across My Sister’s Keeper, a novel by Jody Picoult. I devoured it, crying harder during the last few pages than I’ve ever done while reading any other book. The story was well-written, captivating and emotional. What really stuck with me, though, was the topic at the heart of it all: saviour siblings. Although legal in a variety of countries under certain circumstances, including the United States and the UK, saviour babies have sparked widespread debate on bioethical laws. Every case is different, and few families are actually given the go-ahead to start the process of creating a saviour baby.
In some cases, the stem cells taken from the umbilical cord of the saviour child are enough for a life-saving and life-altering transplant for the older sibling. Other times though, the illness fights back harder, causing multiple relapses and an increased need for healthy tissue, cells or even an organ. So where does one draw the line? In the UK, for example, every additional transplant after the umbilical cord cells are used up needs to be approved by a court. Nevertheless, the family needs to be the one to ask for permission, making a choice as to whether or not they want to continue with treatment. But, at what point, as a parent, do you decide that possibly saving one of your children’s lives is not worth the potential risks a transplant might pose for the other kid?
Child welfare, for the saviour sibling, is one of the strongest arguments against the practice. Some kids may have no issues with their bodies being at their sibling’s disposal for donations because they are happy to help save their sibling’s lives. Others, though, may suffer physical as well as psychological damage. Knowing that you were created largely in order to save your older sibling can be a lot of pressure and a difficult truth to come to terms with, one that, undoubtedly, not every child is okay with. Furthermore, at a young age, legally, one does not have agency over medical decisions concerning one’s own body. Therefore, making these decisions is at the discretion of the parents. Presumably, most families will talk to their child and include him or her in the decision. Nevertheless, parents may still decide to choose the kid’s fate without his or her input.
A further issue that people have with saviour siblings is that they see it as a slippery slope to designer babies: a child whose genetic makeup was altered to either include or eliminate certain traits. Many countries allow for genetic testing for the purpose of detecting certain debilitating or life-threatening diseases at an early enough stage to prevent the pregnancy from progressing. Genetic testing to determine whether an embryo is a donor match for a sibling, however, is taking this a step further. Although, just last year, the UK tentatively green-lighted changing an embryo’s genetic makeup in order to improve its life quality if necessary, this is still a step removed from designing and choosing embryos based on a checklist of attributes parents may want in their child, regardless of any health benefits. People though are worried that saviour babies are the first step towards exactly that outcome.
Lastly, conceiving children for a specific purpose creates a gray area of them being a commodity. The argument behind it is that a child should be wanted and conceived for his or her own sake rather than for a purpose. However, this once again begs the question: Where do you draw the line? Isn’t having a second child so that the older one has a companion to play with just as much an outside purpose as having it in order to save the other’s life? Of course, if a family had a saviour child purely for saving the other’s life and would later discard it, then the issue would be an entirely different one. That, though, is not what the law is for; the child is an additional family member, it just so happens to also serve a purpose within that family unit, other than just being a kid.
Saviour siblings are a very contentious issue, and I have thought about the topic a lot ever since I read that book six years ago. Sometimes, I disagree with governments who made it a legal possibility as I am not convinced that it is ethically acceptable. Then I read a story about Britain’s or France’s first fully successful saviour sibling, and I can only imagine how much joy that child must have brought to its family and how proud it might feel for being able to do something literally no one else in the world could: save its sibling’s life. And, suddenly, I am all for the law, supporting it wholeheartedly. I think, as with so many things, the issue comes down to each individual case. People are unpredictable and even more so when faced with difficult or nearly impossible choices. Imagining a time when saviour babies are the norm and free of controversy is terrifying because it would mean that genetically modified and designed humans are a reality. However, imagining that parents and doctors are just okay with letting a child die is scary in its own way. So although there are just as many arguments against it as for it, I think that saviour siblings can be a miraculous solution to a heartbreaking and dire situation. And as long as the purpose for the child’s conception doesn’t overshadow the love and care it receives from its family, I think it just might be okay.