[vector_rotcev]

Is there any news on whether or not it worked?

I read the article (albeit quickly as I'm on lunch break), but I can't find anything reporting on whether or not the experiment resulted in healthy children, or if they are immune to HIV (if that can be tested without infecting them, of course - I don't know anything about immunity detection either).

[sohkamyung]

There is, for now, little to no news as to what has happened to the babies.

For reporting on the experiment itself, see one of the linked articles [1] which does not end on a hopeful note:

> [T]he editing of CCR5 in Lulu and Nana could have no detectable consequences at all. With no one providing updates on the health of the children, that outcome, perhaps the most likely one, may never be headline news.

[1] https://www.sciencemag.org/news/2019/08/did-crispr-help-or-h...

[vibrio]

It "worked" is binary and that doesn't exist in medicine. The people who have the naturally occurring deletion 32 CCR5 mutation aren't immune. they have decreased risk of infection. There are safe and approved medicines that can greatly reduce the risk of transmission whether given before or shortly after exposure. Unconsented Germ line genetic modification of humans cannot justified, at very least for this use case.

[whatshisface]

>Unconsented Germ line genetic modification of humans cannot justified

How are you going to get consent from a human that isn't even conceived yet?

[leftyted]

I don't believe that speaking of "future consent" of a "potential person" is useful. A child was never asked if he or she wanted to be born. After birth, parents essentially own their children until majority.

Parents make many, many decisions that will shape their child's future. Maybe editing an embryo is just one more. How is that different than choosing to feed your baby formula, put them in front of a TV all day, or drinking/smoking while pregnant (neither of which is illegal)?

This is the essence of the law: figuring out what happens when various rights intersect. I don't think there are right answers here but I think we need to generate some precedent in this area, and quick.

[whatshisface]

Well, I think most people would look poorly on (say) signing a deal with the Mob eight months before birth to steal your child from the hospital and sell them into slavery. Another argument that gets bandied about is how we shouldn't pollute the planet and ruin Earth for our presently nonexistent grand-children. Another example of worrying about the life of non-existent children is when people start saving early for a college fund.

I'm not sure about the exact philosophical mechanics required to transfer rights from the future to the present (or however you want to phrase it) but parents should not be drinking during pregnancy; and it's for their future child's sake that they shouldn't.

Foolishly subjecting your child to an unproven genetic therapy could ruin their future to an extent closer to the mob example than the TV example.

[AstralStorm]

But what if ruining the future is not the outcome? If the therapy is beneficial, or even more so, required for the child to survive?

Not editing in this case could be construed as future child abuse or even murder.

As a note, chances of a child given the therapy, if it's randomly working, are no different than general population, most likely. And if they're better, there goes this argument.

Fearing known unknowns more than unknown unknowns is not logical. Of course people do it all the time. Why does nature get to play the dice but we cannot?

[whatshisface]

>As a note, chances of a child given the therapy, if it's randomly working, are no different than general population, most likely.

That's not true - the average gene is more likely to be working than not, and the average mutation is more likely to break something, if it changes anything, than not.

[teh_infallible]

Exactly! I don’t see how anyone can justify permanently altering a human life like this, in the absence of a clear pathology.

Wouldn’t it be better to simply not have a child?

[AstralStorm]

Easily. If it is an improvement with low chances of failure and even lower of catastrophic failure, why leave all the failures to nature?

Not having, say, HIV resistance could be considered a failure of nature, a deficit.

We're not talking about frivolous modifications for no reason here.

[SkyBelow]

If one views the genetic material as belonging to the parent until conception, one simply needs to get the consent of the parent. If one views the fetus as part of the mother until some stage of conception, it is even simpler to justify.

You might as well be asking when did any two parents get consent to produce their child with the specific DNA that child has (say in a situation where both parents are at risk to genetic defects).

[whatshisface]

>If one views the fetus as part of the mother until some stage of conception, it is even simpler to justify.

Many people only believe that one until you use it to justify things other than abortion. For example the mother can get weird permanent cosmetic body modifications done to her (like, I don't know, getting a finger taken off), but the popular support would probably not be in favor of allowing the mother to get them done to her child in the womb. The best way I can explain what the popular opinion seems to be is as non-existence being neutral, as opposed to unnecessarily messed-up existence which is seen as bad.

This doesn't square with utilitarianism where the difference between 0 and 5 is the same as the difference between -5 and 0, but then again it's not like most people's opinions square with utilitarianism.

[eximius]

That is sort of his point, whether you agree or not.

[gingabriska]

I wonder if 23andme shows CCR5. Or is there anyway to check from 23andme data if we've decreased risk of catching HIV.

[Symmetry]

Yes, it does. Alongside other similar variants, like the FUT2 mutation that prevents norovirus.

[gingabriska]

I never saw this, on what screen can we find it? Do you've any screenshot or navigation URL?

[Symmetry]

Looks like they took that part out after the FDA told them to. You you still download your genome and look that part up yourself from them, though. Possibly by using something like Prometease.

[vibrio]

What decisions would you be making that are impacted by that information?

[gingabriska]

Only serves curiousity, won't be basis for participating in any risky activity.

[dontreact]

I'm not sure that the mutation conferred actually proves to be beneficial, even if it took place without any offsite modifications. It is associated with a fairly large increase in mortality.

https://www.sciencedaily.com/releases/2019/06/190603124709.h...

[imtringued]

Maybe it is possible to take skin cells and infect them in a laboratory.

[vibrio]

HIV infects White blood cells. it won't infect skin cells. Its trivial to draw blood and infect them in the laboratory, but that isn't an interesting experiment. His poorly executed (and unethical) experiment was attempted to be based on the established knowledge that there is a subset of people that have a CCR5 mutation that confers some resistance to HIV infections. That is established and wasn't an experiment that needed to be done on humans.

[AstralStorm]

And why is modifying a human unethical, or more so than modifying any other animal which we do all the time?

Technically, there should've been phase 1 trials. How do you propose to do that otherwise with genetic modification of germline cells otherwise?

Someone will have to be risked, like with any unproven treatments.

Either you can ban human modification on shaky grounds (not really ethics), or you will have to take that risk to just see if modification can take. There is no third way, no amount of animal studies proves the technique works in humans.

You could test it on embryos, but then you have to either kill them or are back in the same place. And it does not provide complete information - only about relatively early development.