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Megan suffers from Fanconi Anaemia, a rare inherited condition which can cause bone marrow failure which makes it impossible to produce blood. The condition meant that Megan was unable to fight infections and she required blood transfusions every three weeks. The BBC reported that since the transplant, Megan has not required any blood products and now attends Addenbrookes hospital in Cambridge for a weekly check-up.
Megan's parents are reported as saying that they always wanted another child but were concerned that he or she could be born with the same condition. Also, a naturally conceived child would have had only a one-in-four chance of being a match for Megan's bone marrow. Instead, the parents worked with teams at three hospitals in Cambridge, Bristol and Nottingham. using IVF techniques, CARE fertility in Nottingham took cells from three day old embryos and tested each one to see it it was a suitable for transplant. Two embryos were implanted and a baby boy, Max, was born. Max was a perfect tissue match and in July an operation took place in Bristol to transplant cells to treat Megan's blood disorder.
Megans's life has been transformed by the operation. She no longer has to have regular transfusions and she can now fight off infections so will not have to spend so much time in hospital. However, the transplant is not the end of her difficulties. Over 20% of people with Fanconi Anaemia develop cancer, often acute myelogenous leukemia. About 60-75% of FA patients have congenital defects, commonly short stature, abnormalities of the skin, arms, head, eyes, kidneys, and ears, and developmental disabilities. The median age of death is 30 years old.
In an interview with the BBC, Kate Matthews said: "Max is loved for being him and not for what he has done. He has completed our family and now I have a bubbly and healthy girl." However, as Josephine Quintavalle, Director of Comment on Reproductive Ethics said of Max: "He owes his life to his capacity to be of therapeutic use to his sick sister, otherwise he would not have been chosen in the first place." The fact is that, Megan is facing a life of illnesses that could possibly resolved because of Max. What if, as is possible, she needs a kidney transplant in the future?
The guidelines for living donor transplants in the UK state,
'the age of consent for medical treatment was clarified by the Gillick case. This determined that minors who are able to understand fully what is proposed and are capable of making a choice in their best interest could give medical consent irrespective of their age. However, even in the case of a “Gillick competent” minor where there is parental consent for donation, it would be advisable to seek consent from the High Court before proceeding. The British Medical Association considers that “it is not appropriate for live, non-autonomous donors (minors) to donate non-regenerative tissue or organs'.
At that moment the regulations would appear to be pretty clear. However, it was only in 2005 that the House of Lords changed the law and ruled that it was lawful to create 'saviour siblings' in order to treat genetic disorders. Already the live donor guidelines provide a degree of ambiguity that could be exploited in the future: twins and 'Gillick competent' children. This is a rapidly changing field of medicine and has wide legal and ethical implications. 
There is an episode of "Family Guy" that deals with surrogacy (which is not the same as above). Both the egg and sperm donors (mum and dad) die in a car crash, and the pregnant woman is left with the issue of abort/keep. That episode (I've been told)was never shown on american tv, but can be viewed on line. My point? We can't even imagine the moral implications of such actions. But then again we allowed ourselves to be lied into a war, so maybe we should be as reckless about saving lives and taking away suffering.
ReplyDeleteI realise a parent will do anything to save their child or even alleviate their suffering.
ReplyDeleteBut I feel sorry for the donor kid. He will be under pressure to undergo any kind of medical procedure that might help his sibling. He is essentially a slave to his sister until she dies.
From my comfy chair, having no offspring to worry about, I think they did the wrong thing. I can't say I wouldn't do the same as them if I were in their position.
This situation is yet another example of how human technological expertise has outrun our puny intellects.
On the face of it this couple now have two happy and (relatively) healthy children, as opposed to one very sick one. Nothing wrong with this so far. When does it turn into some version of Brave New World where people are first encouraged then ordered to abort any child who isn't 'perfect'. I don't have any objections to what this family and others do but we need guidelines and laws that grow as quickly as the technology. In many cases the law catches up over a particularly painful courtcase. For those who think this is 'playing God' then I would suggest they have a look at what doctors regularly do in their day jobs (ie saving people from numerous diseases, accidents etc that 'God' had decreed would kill them). It is pointless to be able to progress as humans if we are not allowed to use the fruits of our progression for the betterment of the human race.
ReplyDeleteIn response to Oppressed Nation, let me pose another scenario. What if the parents decided they wanted another child as a donor, but decided to proceed through natural conception? This is not a theoretical situation and there are cases of families doing exactly this. What are the psychological impacts on children born in such circumstances who are not matches. Do they feel even worse than the engineered donor, as they are unwanted and unsuccessful efforts? This scenario admittedly does not resolve the moral issues. However, one could not legislate against this natural childbirth situation, in contrast to IVF, and one wonders if the IVF scenario is necessarily morally inferior.
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