So editing genes of adults is ok but babies is not? This article sounds so positive and supportive of the act ... I'm a bit confused.
Adults can consent.
Though like most ethical issues people don’t have universal objections.
The very brief discussion about it in genome.gov even mentioned that.
For a genetic change to be passed on it has to appear in the male or female gametes ( sperm/egg ). So if I change your skins cells that change isn't in your sperm/egg so can't be passed on.
When you edit an embyro at an early stage you are effectively changing all cells - including gametes - so the change has impacts beyond the immediate individual.
It's one thing to fix a disease in utero, or avoid the disease in the first place (as in mitochondrial transfers for genetic mitochondrial diseases). It's another to try and blithely "improve" a baby.
It's one thing to enable a viable birth for a child that would otherwise be 100% guaranteed to have a life-limiting genetic disease, but modifying a gene- a gene we do not know that much about- on the chance of reducing a 5% risk of contracting a virus that can be effectively treated- is pretty well beyond what most people would consider ethical.
To put it another way: there would be a 95% chance any CRISPR modifications would have not prevented the baby contracting HIV because 95 out of 100 such babies wouldn't have contracted HIV anyway. And those 95 babies (and at least some of their children) would live with that genetic variant forever.
If the baby was going to be nonviable and you had the chance to eliminate the disease by knocking out a faulty gene or replacing it with the version of the gene everyone else has, that's one thing. But this is a rare gene variant. There may be a reason why only a small proportion of people have it! It could well be that the side-effects of lifetime ART are actually better than the unknown side-effects of this gene.