>So editing genes of adults is ok but babies is not?

Adults can consent.

true, that makes sense ... I'm not a gene or biology specialist, but if you change the gene of a human and he has kids, the kids will inherit the modification, right? so my problem with all these gene manipulations is that the more we do and the more it will impact future generations and who knows what the impact on those will be? So for me having the adult consent is not enough as the impact is not just on him but potentially much greater.

Gene manipulation of an adult likely would target a subset of overall tissue. Although, ethics of modifying reproductive tissue could be an issue.

The difference is what happens if the edit in an adult is unsuccessful. I don’t think people are objecting to edits that are net benefits as much as preforming highly risky procedures.

Though like most ethical issues people don’t have universal objections.

If you modify bone marrow specifically, it won't be passed on.

When do babies consent to being born?

they dont!

it's not about consent. Or, even better, consent is a very weak argument. If you use the consent argument, then you need to apply it for other areas, like being against vaccines for example. But you probably don't use it there because you know that babies can't consent anything (or maybe you do, if you are an antivax).

The very brief discussion about it in genome.gov even mentioned that.

There is also a big difference between editing the germline and somatic genome - the former can be passed on to children and descendents - clearly a much bigger change than one person.

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.

This was designed to cure a disease he already had. The babies were being modified to confer resistance to a disease they didn't have yet.

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.

1) the father and mother had sida so the child would have had too. 2) it does not matter, improving a baby maximize baby happiness and does not affect negatively anybody else, such trivial utilitarism shouldn't be dismissable without solid arguments. That scientist is now in prison for making us closer to go beyond our pathetic human condition (e.g ageing)

You can reduce the risk to the baby quite considerably using existing therapies.

https://www.who.int/hiv/topics/mtct/en/

Interesting but reduce is less interesting than eliminating it.

Sure, but CRISPRing a fertilized egg is not exactly eliminating risk, is it? There's a whole set of unknown risks you're introducing.

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.

From what I remember of the discussion at the time, CRISPR wasn’t good enough for human gene editing to be ethical. It might still not be, but science does have a way of progressing so I can easily believe CRISPR is one step on a path that eventually gets us to where it isn’t a cancer risk.

Yes I assume it is like you just said ... but what scares me, are those consequences the editing might have in a far future, yes we cured cancer by editing a gene, but now we created another problem XY and we are fucked because we can not edit it back, something like that ... you know like oh we have a problem that plants are infested by lice, so lets import frogs from another country, oh but now we have an overpopulation of frogs and they have created a new problem

We’ll always be able to edit it back, the thing to be worried about is someone using the same tech to engineer a new plague — there are 27 post-WW2 genocides listed on Wikipedia, and no particular reason to think that rate will abate before the technology becomes cheap enough and widely accessible for it to be weaponised.