'Saviour Siblings' is shorthand for using PGD (preimplantation genetic diagnosis) to select a healthy embryo which will act as a matched tissue donor to an existing, unwell, child. The practice has provoked much criticism and has been described as creating 'spare part babies' to be used solely as a means to an end. I think the producers of this emotive BBC One documentary sought to change these views by presenting the heartbreaking, desperate struggle that two couples face in their battle against time to create the 'miracle baby' that will save their child's life.
Tom and Alison's four-year-old son, David, suffers from Fanconi Anaemia, a rare genetic disease that leads to bone marrow failure. Without a successful bone marrow transfer, it is unlikely that David will live beyond his childhood years. The most suitable donor will be his sibling. Unfortunately, David's younger sister is not a match for him, and there is no available match on the international donor register. This is an all too familiar story for Samantha and David who, after losing their 11-year-old daughter, Jess, to Fanconi Anaemia, now face losing their 18-month-old son, Alex, to the same disease. Again, Alex's older sister is not a match. The only viable option for both couples is to undergo contentious PGD treatment to create a sibling that will act as a suitable donor for their children.
Each PGD cycle costs approximately £7,000 and, given the age of the women, and the need to produce an embryo that is both healthy and a tissue match, the odds of success are slim. While Tom and Alison are able to self finance the cost of PGD, luck is against them and we witness four failed cycles totalling £28,000. For Samantha and David, the high costs act as a barrier to the potentially lifesaving treatment. The programme watches their devastation as their application to their local PCT for funding fails because they already have one healthy child and do not qualify under its IVF eligibility criteria.
What the programme fails to draw attention to is that using PGD techniques to create a saviour sibling is not just another fertility treatment. It is a specific process reserved for very specific circumstances. It appears that both the PCT and BBC One fail to recognise that using the criteria that applies to ordinary IVF to PGD for the purpose of saviour siblings is to wrongly generalise the gravity of a saviour sibling request over ordinary fertility treatment.
When addressing the ethics behind the procedure, it is clear that there is no doubt in the minds of either couple. Tom and Alison state that 'although we're desperate in that we want to help David; we're not totally desperate in that we've not considered what we're doing. We've thought about it a great deal and we still think this is the right thing to do'. As practising Roman Catholics they have found themselves under scrutiny for their actions, but they argue that upholding the ideals of moral conduct is all very well until you find yourself in extreme circumstances, 'we need to save our son, our moral baseline has to be different'.
As a viewer, you are forced to agree. The devastating account of 11-year-old Jess's death told by her 14-year-old sister, Ashley, and her pain as she watches her baby brother begin his life on the same downhill path really pulls on our heartstrings; crossing our fingers that a saviour sibling will be born. The depiction of the pain these families are facing simply does not allow us to even question whether this is the morally correct way to save these lovely children.
While the programme does raise awareness of this rare genetic disorder, and highlights the potential cure that a saviour sibling could hold, the programme fails to do any real ethical analysis of the contentious practice. Understandably, it shows the hurt and desperation of the two families rather than taking a more neutral and informative stance towards saviour siblings. While providing emotional and compelling viewing, it left me no better informed on the ethics of PGD than when I started watching.
To what extent should PGD be ethically acceptable or available? Is the creation of a saviour sibling forming a life to be used solely as a means to saving another? Is this wrong? What will be the psychological effect on a child used as a saviour sibling when he or she grows up? With such a vast and interesting topic at hand, it's a shame that this programme didn't really embrace the opportunity to really explore these issues.