Comment by arjie
1 year ago
My wife and I faced a similar situation and found it a simple decision. We both carry GJB-2 gene mutations that will likely result in profound non-syndromic hearing loss. We went through Orchid Health to get a whole genome sequence of our prospective embryos and then selected one that was not affected by the condition.
We have 1 more carrier girl and 2 more unaffected girls to work with, and if we want boys later in life we will probably wait for Decibel Therapeutics / Regeneron to finish their GJB-2 gene therapy before we have that child. If there are constraints then we will have a cochlear implant or simply not implant that embryo.
It was obvious to us how it should play out. My wife and I have an obligation to maximize the cone of possibility for our children and a duty to equip them best to experience the world so that they can choose the path through it that they wish.
Just like I would not pierce the eardrums of my child after she is born, I shall not intentionally choose an embryo that carries a debilitating condition that I cannot remedy or mitigate if I can choose otherwise. I don’t think this is a dilemma in any way. There is an obvious choice for us. We will not deny her normative sense organs. My parents got me glasses and contact lenses. My life would have been much less vibrant if they had chosen to not provide me those prosthetics.
Some parents are not so fortunate as us to have this choice. I hope modern therapeutics will enable all children and adults to have the full range of sensors that most humans carry.
> We went through Orchid Health to get a whole genome sequence of our prospective embryos and then selected one that was not affected by the condition.
It's pretty nuts to me that we're at this point now. Eugenics is about to become mainstream.
How does that square with the obligation that parents have to their children to make their lives suck less?
Honestly I'm looking to a future where no one has to worry anymore about hereditary conditions. If we can eradicate viruses we should also be able to manage this.
We have the same mutation and have a deaf son (we had no idea we were carriers until after he was born and failed the hearing screening). I've often wondered if we had decided to have another child if I would have done IVF and selected a hearing child. And I don't think I could do it. It's not rational at all, but it would feel like a rejection of my son (who is doing amazing with his cochlear implant).
Glad to hear the cochlear implant is working well. It's fortunate that the condition we both carry is remedied through a prosthetic like that. It definitely assuaged some of our fears to have that option. If it comes to it that I can have a third child in the future, I will hope that Regeneron has their GJB-2 gene therapy ready, but if not we may well take our chances with the implant.
Stop wondering, you are wasting energy you could be spending on them instead - they were born out of a beautiful, real event that happened exclusively between 2 people. Enjoy all of that.
How much money do things like this end up costing?
In the US, a full round of IVF plus transfer will be around 20k on the low end, up to maybe 40k on the high end, including all medication required if paid for fully out of pocket. Genome sequencing costs a few k per embryo.
I made some quick notes that I'll fill out on this here https://wiki.roshangeorge.dev/index.php/IVF#The_Cost
It cost us about $25k for a cycle to extract and $12.5k to sequence all. Then implantation costs a bit more, but I'm still getting that information. We paid a while ago, and I don't recall off the top of my head.
Must be nice to be rich.
The bringing up part of having children is much more expensive than that.
This certainly is a viewpoint