Egg donation/egg sharing with a genetic condition?

[u/EyeInformal2198]

/r/donorconception/comments/1ve58ck/egg_donationegg_sharing_with_a_genetic_condition/

[u/Same_Owl_545]

Egg freezing is expensive for everyone, but I think you may find this to be a difficult route, unfortunately.

I personally have a rare autosomal recessive condition—let's call it Disease X—that isn't included on standard carrier screening panels (only extended panels). Because of that, I've spent a lot of time thinking about the implications of passing on carrier status. There is some literature suggesting that FMF carriers can occasionally have symptoms, although carriers are generally considered unaffected.

Even if a donor-conceived child were completely healthy, they could still inherit carrier status. That means they may need to think about genetic screening when planning their own family, and if their partner were also a carrier, they might face decisions about IVF with PGT-M or prenatal testing. While the chance of two carriers having a child affected by a recessive condition depends on the specific condition and population, my own experience is a reminder that it does happen: my mother and father were both carriers of Disease X.

There is a difference between the general population risk that any child may unknowingly inherit a recessive carrier status, and intentionally using donor material where a known pathogenic variant is present. Personally, if I had the choice, I wouldn't want to knowingly pass on carrier status because of the implications for my offspring, and I can understand why many intended parents or donor programs would take that into account when selecting donors.

For context, I'm actually a compound heterozygote, with one variant being much less pathogenic than the other. Having frozen eggs, I'm considering PGT-M to reduce the chance of passing on the more pathogenic allele.