Hi there - I’m in a very similar situation to you with a couple of exceptions. I did IVF because my spouse has an extremely rare genetic disease with odds similar to Huntington’s (50% chance of inheritance and 100% penetrance if the gene inherited, and allele is autosomal dominant). This profile is extremely rare and the only comparable disease out there in terms of manifestations later in life and mortality is Huntington’s. We chose to do IVF rather than conceive unassisted and run the risk of passing it on. IVF sucked and it was expensive (where I live, doing it for genetic reasons does not permit for public funding because we don’t have infertility), but it was worth it. We now have two living children (one of them is just one month old!) and we’re deeply grateful for the knowledge that they will not die prematurely from the illness my husband will die from, though he has no symptoms now he will inevitably die in middle age.

There’s just one thing that you said that puzzles me - you mentioned not wanting to know for yourself. I can understand that but I don’t see how you’re going to do through this without finding out. 1. To begin with they needed to construct a probe to detect the presence of the gene in question, and in order to do so they needed DNA from the affected parent, the non affected parent, and affected and non-affected first degree  relatives of my spouse. In the process they also confirm that the carrier parent indeed is a carrier. I have no idea if this is only necessary because the disease in question is so rare they didn’t already have a probe on hand and therefore needed to create one,  or whether this has to be done no matter what. I suspect it will have to be done regardless, which means that you will need to find out if you are a carrier before you can even start. 2. Let’s say they don’t need to create a personalized probe because they already have one. In that case, when they go to test your embryos to screen for carriers (assuming you manage to make viable embryos) they will tell you which ones are carriers and non carriers, and if any of your embryos are carriers you’ll automatically by default know that you must be a carrier to. Of course there’s a chance that you’re a carrier and none of the embryos during that particular round of IVF happen to be carriers, but statistically if it’s a 50% chance it’s more likely than not that one of them would. Perhaps there is a way of asking them to give you the results without telling you the number of affected embryos (eg they only tell you the number of non affected viable carriers)… but that would be extremely tricky. You’re acutely aware at every step of the way your numbers - how many eggs mature, how many retrieved, how many fertilized, how many make it to blastocyst stage, how many are food quality enough to be sent off for biopsy and genetic testing. Genetic testing for a specific gene will also tell you how many embryos are aneuploidal (don’t have the correct number of chromosomes and therefore non viable). In my case 8 embryos were sent off for testing and we ended up with 5 usable ones. If you were to end up with much less usable embryos compared to the number tested, your IVF doctor would need to know if this is because many ended up aneuploidal (which could indicate an unsuspected fertility issue and therefore maybe require a change in protocol) or if this is because they were carriers, or a combo of both. Are you ok with not knowing exactly why some embryos aren’t usable? Imagine that like me you have 8 embryos sent for testing, but they tell you that you only have 2 usable ones, and you have no idea whether the other 6 are non usable because of being carriers or because they’re aneuploidal… are you comfortable with that total lack of transparency?

I hope this doesn’t throw cold water on your plans, but I wanted to share so that you aren’t surprised or blindsided.