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Ethics and safety in the 'saviour child' debate

23 June 2003
By Juliet Tizzard
Director, Progress Educational Trust
Appeared in BioNews 213
This week, the British media has gone crazy about a newborn baby. His name is James Whitaker and he was conceived in order to provide stem cells for his older brother, Charlie. In the reams of commentary which followed James' arrival into the world, two main ethical issues emerged. The first question is whether it is wrong to create a child in the hope that it will be of some use to another child. The second issue, which follows from the first, is whether it is psychologically harmful to a child to know that it has been born for this purpose.

These questions raise what seem like new dilemmas brought on by the new age of genetics. But, in reality, they are rather old quandaries which many parents have faced before. Couples with a sick child whose health depends upon a matched tissue donation have been known to have another child in the hope that they will be a suitable donor. Whilst this might not be considered the most noble reason for having a child, it is usually regarded as a private family decision. And indeed it was in the case of the Whitakers, whose second child, Emily, was conceived naturally, but who sadly turned out not to be a compatible donor for Charlie. To answer the second question, whether psychological harm will be done to the so-called saviour child, one need only look at Emily, who shows no signs of being neglected or psychologically scarred in any way, despite the fact that her stem cells could not be used to treat her older brother.

If parents have been left to make such judgements privately up until now, why were the Whitakers forced to have their wishes scrutinised by the nation? Because the technique they sought to use is one normally carried out in order to avoid the birth of a child with an inherited disease. In the case of the Whitakers, the government regulator, the HFEA (Human Ferlisation and Embryology Authority), did not consider the reason for having embryo screening to be sufficiently immediate to warrant its use. As chairman, Suzy Leather, told a number of newspapers, 'No one can say for certain what the long-term risks of embryo biopsy are. If there are benefits for the child to be created from the biopsied embryo... the balance of potential harm and potential good falls in a different place than if you're simply biopsying an embryo for the benefit of another person.'

This sounds reasonable enough. But it is important that we do not get safety and morals mixed up in a case like this. If people have difficulty accepting what the Whitakers did, they have to find a way of explaining why they think that. Perhaps people who object to this case really are concerned about the slim chance that the procedure will have damaged James Whitaker in some way. But sometimes safety concerns can be an easy route out of a moral maze. Mere mention of a 'precautionary approach' is often enough to trump all other concerns.

The fact that James did not himself benefit from the embryo screening procedure does make the issue slightly different, but only in the sense that it might have made it a more difficult decision for his parents. Decisions that parents make in relation to their children are often about weighing up risks and benefits and making a judgement which seeks to maximise their health and well-being. The difference with Jayson and Michelle Whitaker is that, because of their unfortunate situation, the stakes were higher.

28 July 2004 - by BioNews 
Charlie Whitaker, the boy at the centre of one of the fiercest debates over so-called 'saviour siblings' has had a stem cell transplant and is 'on the road to recovery', say his parents. Jayson and Michelle Whitaker made the decision last December to go ahead with the treatment, made possible...
8 December 2003 - by BioNews 
According to a report in the Daily Mail this weekend, Michelle and Jayson Whitaker have now made up their mind to go ahead with the stem cell transplant that may save their son, Charlie. In June, the British couple, who were refused permission by the UK's Human Fertilisation and Embryology...
1 September 2003 - by Juliet Tizzard 
A recent interview in the Times newspaper revealed that Suzi Leather, chair of the Human Fertilisation and Embryology Authority (HFEA), thinks that the time has come for a change to the UK's embryology laws. The interview with Ms Leather referred to a number of procedures which might need to come...
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