Sunday, 26 September 2010

Saviour Siblings

I've had far too many political posts recently for a blog that was originally meant to have a lot of health care related posts, so I thought I'd redress the balance.

I saw a piece on the BBC about whether people should be able to use IVF to have children who could then be a bone marrow (or blood stem cell) donor for a sick brother or sister. As you might imagine, the idea of having another child, and 'designing' them to ensure they could save a sibling is pretty controversial.

At first, the idea of having a child to use them for their marrow seems very questionable indeed and possibly the start of a slippery slope towards a society where parents see one child simply as an organ donor for others. Similar to the premise behind the film 'The Island', but maybe without the Hollywood drama of it all. I thought it was a dangerous idea when I first looked at it, but I've come around to it.

To understand, it's probably easier to go through how it might work in an example. Many young children are born with life-threatening and degenerative conditions, where the only hope of cure is a tissue matched donor. The best hope of a match is a close blood relative, so brothers, sisters and parents are your best bets. But what to do if the parents and any older siblings aren't matches?

At the moment doctors can advise that if the parents had another child, there is a chance that they could be a match. There's nothing controversial about just having another child, it may well have been in the couple's plans already. But with many of these blood disorders the chances of any sibling being a close enough match are only 25%. Couple that with the fact there's a 25% chance they will have the same disease as the already ill child and it means that having another child will only solve the problem 19% of the time. Quite a low chance for such a big decision.

Depending on whether the family think they could cope with another child with this illness there are either going to be several pregnancies or several terminations before any hope of saving the elder child is borne out. Either way, it's a horrific mental strain on the mother.

There is another option.

Modern IVF allows for the option of pre-selecting embryos which will be tissue matched for a sibling. You can guarantee that pregnancy will mean both a healthy child, and a child that is able to do something to save the life of their sibling. No-one is talking about producing a 'perfect child', simply one which is going to be able to live a full life.

It makes both moral sense, and economic sense for the NHS to fund it. It may seem insensitive to talk about money when looking at life and death, but like it or not you need to have money to save lives, and the more cost effective the NHS can be, the more lives can ultimately be saved.

The total cost of one cycle of IVF, plus all the other tests and tissue matching etc. costs less than £10,000. Compare that to the cost of refusing to fund this IVF and caring for a child with an incurable illness for the rest of their lives, paying for drugs and constant care and support. It could easily run into the millions.

We should be careful about taking blind leaps into wherever science opens up opportunities. But we shouldn't let that fear stop us saving the lives of people for whom the only hope is the cutting edge. There is no reason why the NHS shouldn't be funding these 'saviour siblings', especially in a country where genetics is so highly regulated.

Creating a 'perfect child' is morally questionable. Creating one free of deadly illness with the ability to save a sibling isn't.

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