Genetics in the News
Its been in my mind alot..'I wish my child didn't have a genetic disease' but today I read that babies made from 2 women and 1 man as an advanced form of IVF has been approved in the UK so "the historic and controversial move is to prevent children being born with deadly genetic diseases". I have grappled with the fact that medicine at the moment is not advanced enough to cure cystic fibrosis and have questioned that if there was a procedure to remove faulty DNA cells in a foetus, if I would have had it done had I known my baby would have Cystic Fibrosis. I guess its partly jealously that another mother might have a genetically fine child by being offered a choice which I never had, but its also the price that being picky comes with, morally and financially for the NHS.
And this news comes as the drug Orkambi is being fought in Parliament for the price to be lowered so it could be available to all CF patients who may benefit from it. At £100k per year, its alot of money for one person but I feel that many people didn't know they would have a CF child and that they should have the money spent on their medication instead of money spent on unnecessarily altering DNA for a 'perfect' child.
I have thought many times whether we would have another child and the moral issues surrounding that, is it right to bring a child into the world already knowing they will live a harder life than others? Is it fair on a brother or sister who may be born with a worse case of CF or have none at all and how that would effect the other sibling? I sometimes think that you can have a child and make an enjoyable life for that child whatever condition it may have, but I do think these issues need to be raised and for laws not to be passed without a greater discussion on morality.
The BBC statement at the top of this post also irritated me and spurred me on to write this because everyone would obviously rather not have a genetic disease. Saying it could be prevented and therefore a child like mine and many out there would never be born, is hurtful to all the children and adults that do have genetic diseases and makes me feel as a parent that my type of child is not wanted.
ps Here is my genetically challenged and cheeky baby, he may drive me mad all day but he's perfect.
And this news comes as the drug Orkambi is being fought in Parliament for the price to be lowered so it could be available to all CF patients who may benefit from it. At £100k per year, its alot of money for one person but I feel that many people didn't know they would have a CF child and that they should have the money spent on their medication instead of money spent on unnecessarily altering DNA for a 'perfect' child.
I have thought many times whether we would have another child and the moral issues surrounding that, is it right to bring a child into the world already knowing they will live a harder life than others? Is it fair on a brother or sister who may be born with a worse case of CF or have none at all and how that would effect the other sibling? I sometimes think that you can have a child and make an enjoyable life for that child whatever condition it may have, but I do think these issues need to be raised and for laws not to be passed without a greater discussion on morality.
The BBC statement at the top of this post also irritated me and spurred me on to write this because everyone would obviously rather not have a genetic disease. Saying it could be prevented and therefore a child like mine and many out there would never be born, is hurtful to all the children and adults that do have genetic diseases and makes me feel as a parent that my type of child is not wanted.
ps Here is my genetically challenged and cheeky baby, he may drive me mad all day but he's perfect.
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