by AVI VINCE
The pregnancy/baby debate is an ongoing cycle of theories and opinions. If science and society aren’t commenting on how and when you should consummate (you want my leg where?), they are talking about what and how you should eat, drink, workout and look during your pregnancy. Then there is how to pop it out (again, you want my leg where?), breastfeeding or bottle and a further twenty five years of conflicting advice on how to best raise them.
So why not add one more log of word to the fire pit?
Would you genetically modify your baby?
I’m not talking about blue eyes vs. brown eyes, or blonde vs. brunette. I’m talking about the recent laws that may be changed in the UK.
Reported in newspapers this week, UK scientists are offering up the change to have a guaranteed healthy baby. This is a baby that wouldn’t have any of your (the parents) harmful genes that would put them at risk of hereditary diseases.
In simple terms, it means when their GP asks, “Any history of hereditary disease in your family?” they can say, “Yes, but not for me.”
What’s the catch?
To remove your harmful DNA, scientists need a third parent. The recipe for a genetically disease free bub calls not only for you egg mixed with his sperm, but an additional donated egg thrown into the mixing bowl. More scientifically, whatever bad DNA you and your partner have gets removed and replaced (using the donated egg) with healthy DNA. And bang, fresh out of the oven, your baby won’t have your or his hereditary diseases.
Genetically modifying babies… Is this a good idea?
While it is not a disease, I’m lactose intolerant. According to my doctors, there is a gene in me that is switched off. My body just cannot digest the lactose from cow’s milk. But this gene isn’t my fault. While in my mum’s womb, I didn’t go, “Hey, wouldn’t it be fun to turn this switch off.” No, apparently it is hereditary. Someone in the branches above me on my family tree was lactose intolerant. Thing is, it isn’t anyone who is still alive. So I have a dead great-grand somebody to thank.
Again, I’m prone to high-cholesterol. I found out through a routine blood test a few years back. The doctor assured me it has nothing to do with my diet or weight (I heart leafy green vegies), but rather my realies on my dad’s side. They are from Eastern Europe, who are prone to high cholesterol levels. So thanks Dad.
If this technology was available when my parents were… let’s not go there. Would I want them to have used it? Probably not. Yes, it would’ve been nice to not be lactose intolerant so I didn’t suffer from daily stomach aches until I was 10 years old when finally a doctor diagnosed me instead of saying I was attention seeking. But really I don’t mind picking sorbet over ice-cream (but that may be because I’m vegan).
But what about those chronic hereditary diseases? The ones that can cause your child pain for the rest of their life? The one that pop its ugly head up like cystic fibrosis. Would you take the genetic altering option to break the chain of hereditary disease? Is this a way to find a cure for these diseases?
Or would you be traditional and put your baby at risk?
Of all the questions for parents, genetically modifying babies has to be the hardest one.
Avi Vince works as a manager in a non-profit organisation. She is starting her freelance writing career and you can follow her blog here or at twitter here. Her opinions are entirely her own.








Comments
32 Comments so far
I am a mother of a 1 year old with Cystic Fibrosis…. she was diagnosed at 3 weeks old, until then i didn’t know anything about CF as no one in our families had ever had this terrible disease.
We are going to use IVF for our next pregnancy as we don’t want to have another child suffer like our darling daughter does and she is only expected to have HALF the lifespan of a normal child – that is heat breaking.
I think it is disappointing that genetic ‘modification’ gets tangled up in conversations with the colour of eyes/hair or the height or sex of a child – no matter what they turn out with, this is them and they are perfect – because they are HEALTHY.
If you had the choice to take away a disease and prevent a child from having to grow up with a debilitating chronic disease such as CF (but of cure there are many more) you shouldn’t be judged or be labelled ‘unethical’
loading...
My parents don’t need to worry, i am already perfect. ha ha ha
loading...
People who suffer from faulty genes have lived lives knowing the disadvantages they suffer due to their conditions. The guilt that faces us in the choice to have children and possibly pass our genes onto them is a harrowing one.
People who like the idea of PGD don’t want a ‘perfect’ child. We just want to live knowing we have done as much as possible to limit the suffering that we have faced ourselves.
Referencing PGD to things like cholesterol and lactose intolerance completely takes away from the gravity of what most people would use PGD for.
Genetic modifcation is not about creating a pretty, perfect baby. It’s about giving these children a chance at a normal life.
I’m disappointed in this article, and disappointed that Mamamia chose to run it without providing any background information or consultancy with an expert.
loading...
Absolutely agree. It’s hard for someone not in this position to understand. Like trying to explain what being a parent is like to a non-parent. My daughter has inherited a genetic disease from me. Everyday I have to give my 4yo girl a painful injection. It sucks. It allows her a chance of a normal life with out the ill health and disabilities I now have but to be able to prevent it all to start with – I’d be super happy with that.
loading...
My kids have a strong genetic chanceof having cancer and depression. If I could reduce their risk of cancer I would, but probably not for the depression. I think my reasoning is that I can help deal with the depression through medication, counnselling and awareness but cancer is a lot harder.
loading...
We have done it, here in Australia using genetic testing prior to implanting our embryos in IVF to prevent my kids having the gene that I carry for Breast and Ovarian Cancer. This technology does not include the use of a 3rd parent/ egg! I am so glad we did it! I personally have an 80-90% chance of getting breast or ovarian cancer meaning i have to consider rem
loading...
woops here is end of my comment..I personally have an 80-90% chance of getting breast or ovarian cancer meaning i have to consider removing my ovaries/hysterectomy at around 40yrs old which will mean early onset menopause and am also considering preventatively removing my breasts. Currently aged 33 I have a 6 monthly checks including annual MRI, mammograms and ultrasounds. My two daughters currently aged 2 and 9 weeks do not carry this gene due to the efforts we went to.. They are by no means “perfect” children but I am sure glad that they will not grow up with the same fears and possible illness I myself have to deal with!
loading...
I would do it in a heartbeat – my child is so severely physically disabled, that if I could have changed any of it I would have no question.
loading...
This is all too much like the movie GATTACA for me.
loading...
If my child were at risk of contracting a horrid hereditary disease that was debilitating or life threatening, yes, I would do it. But it would need to be pretty extreme. No, lactose intolerance certainly wouldn’t have me running to introduce a third parent in the genetic mix up.
loading...
My daughter has a congenital heart defect that has required 3 open heart surgeries to correct, whether its genetic or envirommental we dont know, but if I could have spared her this disease I would have done anything. Wouldnt you?
loading...
It’s not quite the same as genetically modifying babies but I am giving serious consideration (have met over Skype with a dr from the US clinic) to doing gender selection IVF. I am desperate for a daughter & if our 3rd baby is a boy I think we’ll definitly be making the trip.
I honestly don’t see any difference between these fertility choices and being pro choice for abortion or doing IVF generally.
loading...
Oh, if I could’ve turned off the gene for ADHD I would’ve. It’s so exhausting having to tell someone the same thing 3 times and then argue the toss over silly things when my son gets fixated.
Sure, he may be the next Richard Branson with his energy and drive but he could also be the next self-medicating yobbo if he chooses to go down the wrong path.
You’d have to set up an ethics committee on what could be allowed and what couldn’t.
loading...
Although it may be exhausting for you, it’s a bit different when your child has something like ADHD, compared to a serious predisposition to cancer, strokes or degenerative diseases. An ethics committee would never allow genetic selection on something which, when compared to diseases which kill, is somewhat more trivial
loading...
Speaking with some parents, I’m often left with the impression that their children are perfect. No child is more beautiful. No child is more graceful. No child is more intelligent….etc etc… than their child is.
Trust me, I spoken with quite a number of parents. In some instances what I read on this very site leads me to believe that other parents also believe that their offspring were blessed with the perfection gene.
To those of us, blessed to have been introduced to the said multi-talented, brilliant, gifts from God that are the reason for your pride….we either want to kill them because they are such little shits or because ours are so much better.
As for trying some type of genetic engineering to ensure that the child is blessed with perfect health, well….any type of genetic modification comes with risks.
loading...
I live with a disease which although not life threatening is certainly life altering. I have a treatment regime that affects my lifestyle and even with full compliance live with symptoms. My disease is in all likelihood generic, although the specific gene is not identified. I have already decided that should it be possible when I have children I will have embryo screening. Do I wish I wasn’t born, or blame my parents? No – they didn’t know. But I couldn’t live with knowing I could have prevented my child from suffering as I have and didn’t. Would I go to the lengths in this article? I’m not sure – I have never heard of it before, and as confident as I am now in the choices I will make, it took time to come to peace with them.
loading...
I would do it. In a heartbeat.
loading...
I’d rather these scientists worked on trying to cure diseases/disorders that stop some people from being able to have children. I have epilepsy, and I can’t have any in case I have a seizure while pregnant, or have one while I’m bathing a baby.
loading...
I’m epileptic as well and i’m curious- what happens if you have a seizure while pregnant? I haven’t had a seizure for 5 years, all my doctor told me was that i need to switch medications before i have a baby (mine can cause birth defects).
My epilepsy is genetic and i could possibly pass it on to my children, but i don’t think you can screen for it!
loading...
I have a friend who just had a baby and she also had to change medication before having her daughter. She did have a mild seizure whilst pregnant. Everything was fine luckily but what can happen to the baby is that they can lose oxygen for a while which could damage their brain.
loading...
Mine isn’t genetic, it’s the result of an injury, and can’t be cobtrolled by medication (not for lack of trying). My doctor believes I could cause the baby harm if I fell while pregnant. Similarly, having a grand mal seizure while pregnant increases risk of brain damage to any baby I may carry. Basically it’s safer not to, was the message I was given
loading...
What about ‘survival of the fittest?’ Thats what happens in nature, and has happened for millions of years, and has worked perfectly well. I think this idea is a bit too ‘brave new world’
loading...
There is a good chance that you wouldn’t be here if that was still the case. Remember the maternal and infant mortality rate was a lot higher even 100 years ago, not to mention the infectious diseases that vaccinations have prevented, or sewerage for that matter.
loading...
I’d be dead. Personally, I think that would be a loss!
loading...
Never, Its our differences that make us perfect.
loading...
Its a hard one, if a child is at the risk of having an incredibly bad disease such as cf or anything that could mean they won’t have a long healthy life then I get it. But to take away genes to stop the risk of them possibly getting asthma, cancer later in life, or reduce the risk of being lactose in tolerant seems like it would be going too far. I think they need to just leave things as they are if they start doing this what’s nxt?
loading...
If I could get rid of the ADHD that still affects my son at 22 I would.
loading...
Great to see some commentary on this that prompts people to start thinking and discussing.
I think Avi over-simplifies things. We are many years, and billions of $ in research, away from being able to do this for most diseases.
For some diseases, we have found the genes, so this idea is already being used in an IVF setting to select embryos without the faulty gene.
For some diseases, we do not understand what causes the genes to get switched on and off, so more work is needed. Or we have identified a gene that increases the chance a person will get a disease, but we don’t know what determines if they actually will or not. This is the case with many cancers.
And sadly, for many rare diseases, we do not even know which exact genes (because there is often more than one) cause the disease.
When I think about this complexity, it raises even more questions:
If you did use technology like this, you should be aware that there are many diseases that your child could develop anyway. Some of these will have a genetic basis, but you were just not aware of them.
This practice of eliminating these so-called faulty genes may have unintended consequences to the way our species evolves. We do not fully understand what each gene does, so we really are taking a gamble by eliminating them.
And the one that plays on my mind the most, because I had a sister with a chronic genetic condition (Tuberous Sclerosis) is how does this practice change the way we view people with disabilties? Do we see them as being less deserving of support because their parents should have avoided them being bron with such a condition? Do we create social pressure to use technology like this, in a similar way as we have made early pregnancy screening for conditions such as Downs Syndrome, routine?
So then to answer Avi’s question: No. I have chosen to take my children as they come to me (So far, 1 is perfect and 1 didn’t make it past 13 weeks). And I choose to lobby for causes such as the National Disability Insurance Scheme and scientific research funding that will lead to better treatment and support for people with inherited conditions.
OK, end of Sunday morning rant.
loading...
Well said. I have a child with severe autism and global delay and you’ve very eloquently said what was on my mind. : )
loading...
If I could get rid of the autism that affects not only my 2 sons, but impacts greatly on the rest of our family and our lives, I would do it in a heartbeat.
loading...
I don’t have kids, but we have been discussing this topic at uni anyway. I don’t really like the idea of it, i think it’s ‘playing god’ too much- what will come next after this? A race of super humans that are perfect? It’s like the movie Gattaca (which I studied at school). I dunno, I think i’d leave it to mother nature if i wanted kids. Although i think an exception in this case could be if the child had a very high risk of developing a life threatening disease that would be detrimental from birth
loading...
interesting debating topic. wouldn’t this just be one step closer into making us all the same… as all diseases and the like could be eradicated… then we wouldn’t need to keep doing it (in about a billion years, when there’s better technology or we’ve all been wiped off the face of the planet by an asteroid or something *wink*)…
If the science behind it was 100% of course i’d be all for it, what parent WANTS their child to suffer… but i also think that hey, something has to go awry at some point when we start just messing with the genome like that?!?!
loading...