Millie Chambers finds that a saviour sibling is not as immoral an idea as you she first thought.
Films, such as My Sister’s Keeper, have dramatised the use of saviour siblings, triggering an objectionable emotional response. When first exploring the subject, I was utterly against the idea of a child being used to treat a sibling. However, the reality is far less evocative and an extremely innovative way of saving otherwise helpless lives.
A saviour sibling is a child conceived naturally or through IVF to treat an older sibling with a genetic disease. This involves the selection of embryos free from disease and a “perfect” donor match to the child. Half of our human leukocyte antigen (HLA) type is inherited maternally and half paternally, meaning each sibling has a 25% chance of being a match, compared to other relatives where the chances are much slimmer.
Once born, saviour children offer the chance of a permanent cure for their sibling via haematopoietic stem cell (HSC) transplantations. HSCs are blood-forming cells found in bone marrow, peripheral blood, and umbilical cord blood. For many lethal disorders, these transplants are the only current therapeutic approach.
The Nash family, whose story inspired My Sister’s Keeper, were the first to produce a saviour sibling. Their daughter, Molly, suffered from Fanconi anaemia, a life-threatening disease characterised by bone marrow deficiency and with a life expectancy of 8–9 years. Her only hope of survival was a bone marrow transplant from a perfectly matched sibling.
Following umbilical cord HSC donation from her newly born brother, Adam, Molly had an 85–95% chance of recovery, high statistics for a child whose fate would otherwise have been death. Today Molly is alive and healthy because of Adam.
Having a child is always the choice of the parents
The objection that saviour siblings are commodities and not valued in their own right is a difficult argument to sustain. Having a child for the purpose of treating a sibling isn’t dissimilar to more common purposes of providing an heir, “completing” a family, being a playmate for an existing child, or saving a marriage.
Children are used as means in many cases, and I believe it’s untrue to claim that most children conceived for the reasons above aren’t loved or that it determines the attitudes towards them once born. It’s difficult to separate the reasons for conception being genuine desire for a child or to save an existing child; however, if parents are willing to go to extremes to save an existing child, they most likely have a lot of love and care to raise other children.
Avoiding the slippery slope
The idea that manipulating embryos for saviour siblings could manifest into regular production of designer babies is a fear of the technology being overused rather than being used for good and preventing suffering.
Screening out a genetic disease isn’t comparable to screening out a particular eye colour, especially in the UK where trait selection is heavily regulated. Genetic disease elimination gives a child the chance of being on a relatively even playing field when entering the world by being healthy. What parent wouldn’t want to give their child every chance of survival?
Putting the kids first
Only one argument against saviour siblings holds merit: the welfare of the child.
This is difficult to assess because it varies greatly depending on the individual and is lacking in research. However, if a saviour sibling wasn’t created through IVF, the alternative would not be another life in which they were conceived naturally, but non-existence. Therefore, whilst psychological harm to the saviour sibling is unpredictable, even if some psychological harm is observed, it’s unlikely that non-existence would have been the better option. Despite this, research into the impact on the saviour siblings’ welfare is required to make a fair assessment. There should also be welfare checks and better legal protection as they age and gain more autonomy.
Nevertheless, the UK’s monitoring of saviour sibling creation is one of the most regulated in the world and is imperative in preventing the misuse of this technology. The Human Fertilisation and Embryology Authority demands that each clinic apply for a licence for every new disease they want an embryo tested for. Furthermore, tissue typing cannot be done for the purpose of harvesting organs, and a “best interests” test is conducted to evaluate the pros and cons of each case.
Utilising this procedure can save, as well as create, lives. All I see is a net gain.
Millie Chambers (she/her) is a third-year Neuroscience undergraduate student. Twitter: @MillieChambers_