Should any parent genetically alter their child?
It's a big question to start writing about. There are
seemingly lots to consider, including whether we are crossing a certain ethical
line. I'm in no way experienced,
qualified or egotistical to believe it's something I could perfectly cover in
one post. However, it is a subject that’s been on my mind for the last few
months.
With current leaps in science and technology the idea of
creating a perfect child is no longer pure science fiction. Genetics and
“designer babies” are topics that often arise.
I know new parents are always excited to see how the genetic
lottery has panned out and what exactly their child will look like or how their
personality will be.
Such conversations as:
“I wonder if they will have my colour eyes?” or “I hope they
don't have my shaped nose".
I know when we were expecting we had the same conversations.
We always hoped neither would inherit my shocking short height but would get
the tall gene that the boys mum’s (male) family seem to have.
When William was born there was no doubt he was my son. The
likeness was incredible. When we were expecting James we even joked that we
hoped he would come out looking more like his mum so she could have a “mini
me”.
Both boys show a strong family resemblance. There is no
doubt they are brothers and both over the years have shown physical and
personality traits of both of us.
But would I change them? Would any parent once they had a
child?
I am sure that most parents would instantly cry “No! Of
course not, I love them for who they are”. For that very reason I would agree.
I look at my two and would never want them any different. Except that isn’t
completely true. Despite my undying love I would change something about them.
Initially most people think about “superficial” changes when
they consider the genetics of children. However, what if they inherited a
genetic illness and disease? Would anyone as a parent change their child then?
Muscular Dystrophy is a genetic condition.
Different muscular dystrophies follow various inheritance
patterns. It can be inherited by individuals as an X-linked disorder, a
recessive or dominant disorder and furthermore, it can be a spontaneous
mutation which means errors in the replication of DNA.
Before becoming parents we knew we would have prior
knowledge and subsequently prior warning if our children had inherited it. We
could seek medical help, train muscles, build up where we could so the progress
of their illness would be less than mine and we also knew that there was the
hope that medical advances would happen.
Two things have happened.
1. William has started showing early signs of having
Muscular Dystrophy. He has similar shape and movements as I have and you can
really see the difference in his shoulder blades (the scapulo part of
Facioscapulohumeral dystrophy)
2. Before Christmas it was announced that there is a
“potential” treatment for a strand of Muscular Dystrophy that potentially and
positively impact quality of life and alter the course of disease in children.
Furthermore, it is proprietary gene therapy candidate of a one-time treatment
for SMA Type 1 (Spinal Muscular Atrophy) and is designed to address the
monogenic root cause of SMA and prevent further muscle degeneration by
addressing the defective and/or loss of the primary gene.
This treatment was announced at the start of the year and to
be honest I am still unaware of how I feel about it. The combinations of the
two above points have raised many conflicting and complicated feelings.
I don’t want either of my beautiful boys to go through what
I have, am still experiencing and potentially will further down the line. I
don’t want all hopes and dreams to be dismissed because they're no longer
physically viable. I don’t want them to go through the pain I go through all
day, every day. I don’t want them to lose different physical functions, fall,
feel trapped by their body or fear what the future will hold. I am sure every parent would feel the same.
Muscular dystrophy like a lot of degenerative and vile
diseases enters people’s lives, rips it apart and turns it upside down.
For me when it comes down to genetically altering children I
look back and would consider it as a strong possibility if it avoided what we
now know would happen. This new therapy treatment is obviously a hope for many
individuals with Muscular dystrophy and again focuses on altering what the gene
does.
I wouldn’t be one to pick and choose eye colour and look for
a perfect child. I also know that my experience has shaped me into the person
that I am today and, although difficult at times, I live a happy life. Yet, if
it comes down to offering it or a similar treatment to William, or James, so
they would live without suffering then I would without a doubt.
So what would you do in my situation? Would you genetically
alter your child?
In your case I would definitely alter DNA to prevent suffering. A huge part of me is terrified the girls will have similar issues with their back & nerves, If I could prevent that I would. I hope Will gets all the help possible! x
ReplyDeleteIt's a difficult and personal decision. I have 2 genetically pre selected children, they were screened as embryos to make sure they didn't have Tay Sachs disease of which my husband and I are carriers. My third was natural conception where we rolled the dice and got lucky. Advances are made all the time and I hope things change for you for the future x
ReplyDeleteNow I know I am horribly guilty of teasing you relentlessly (although you give as good as you get), but you also know that I love you to bits and I hate knowing that you are in so much pain. I would also hate to see either of the boys in the same boat, so absolutely yes, if I were you I would alter the DNA...and now the gushiness is done, you are still like the most annoying little brother in the entire world :-p
ReplyDeleteWithout question I would alter the DNA and I hope that if William does turn out to have MD that the treatment is not only running on a mass scale but that it's also successful.
ReplyDeleteSo lets look at altering genes in other ways, I have bipolar and that makes my children have a 60% chance of having mental health issues, it's even been linked to autism as it's got similar markers and of course Iain has aspergers, would I like to have been able to do something about that, yes, definitely. I adore all of my children but if I could have a way to make sure they went through life without having to worry about mental or physical challenge then hell yeah, I'd do it without thinking. I wouldn't however change them now or try to reverse anything because they're perfect as they are.
If I were in your shoes I wouldn't hesitate to choose gene therapy if it were available and offered to Will.
ReplyDeleteAlthough my hearing loss is nowhere near as serious problem as MD, it is something that I would have prevented passing on to my boy had the option been available as it has had a negative impact on his life.
As parents we would all do what we can to reduce or remove illness, pain and suffering from our children.
I've always thought the answer would be no, but when it comes to inherited conditions like MD or Huntington's I think anyone would be mad not to, surely.
ReplyDeleteOf course you'll always find someone who will claim that if their child is born with ginger hair or green eyes it will be forever disabled, but where there is a genuine genetic risk of a life limiting condition it should be done if it's possible.
Without a shadow of a doubt. I definitely would. It's a completely different issue to cosmetic changes just for the sake of them.
ReplyDeleteGreat post, I agree with all the others that you do anything you can to stop your child from suffering.
ReplyDeleteP.S. You need to proof read that first paragraph, if only someone had told you to do that before you published it...
I would genetically alter my child if it meant they wouldn't inherit my type 1 diabetes, which in the grand scheme of things is nothing compared to what yourself and others go through. It's not a definitely inherited disease, I did not inherited it, I was the first in my family history as far back as we know, but it does cause me suffering and the future for me and if I could stop my children getting it too I definitely would.
ReplyDeleteTo tell you the truth Martyn, my son, 34, has duchenne muscular dystrophy and I will not answer that question. It messes with my mind to be in King 'Solomon's' position. I am not wise enough to know.
ReplyDeleteNo matter how strong your views are on this I think any parent would do anything to prevent any form of suffering for their children, including genetic alteration..
ReplyDeleteGreat post, but such a complicated one! It's especially difficult thinking for me as my River has Downs syndrome and I wouldn't change him for the world. And that's the honest truth, I would not take away his Ds. BUT he is healthy, he has no medical issues at all, just an extra chromosome. If I take that chromosome away, River is no longer River and he is pretty awesome! The hardest thing for me is, if you had asked me this question before I had him, I would have said yes without a doubt. I wouldn't have thought twice about taking away his Down syndrome (the other option doesn't even bare thinking about), and our family would be all the worse for it. However, if my child was sick, or in pain, or in anyway suffering I would totally take that away.
ReplyDeleteI'm surprised by some of the comments here. I am somebody who would choose to do this if I thought that it would prevent my child from pain or suffering. I would have thought I was in the minority there. I think it becomes a tricky subject. I don't think its appropriate to try and make a child taller or smarter, but there are other things I would love to have control over. The ethics are quite a debate. I don't know where the line would be drawn or who would be called on to draw it
ReplyDeleteYes, I would change them to prevent a medical condition that will cause them suffering.
ReplyDelete