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Comment by fabian2k | Hacker News Reader

Informing the children about the experiment is the very least they should do. And I think 18 is a bit too late, I probably would do it a bit earlier than that. Anything after that has to be their own choice, like it is for everyone else.

This was just a completely reckless and unethical experiment, I hope it didn't cause serious damage to those kids.

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Ethics question: if those people could lead an otherwise happy and normal life not viewing themselves as some kind of an experiment wouldn’t it be immoral for someone to take that away from them?

> I hope it didn't cause serious damage to those kids.

Me as well, but I also hope this doesn't turn out like the plot of Legend.

And in addition to that, wary of my lack of knowledge in this area, will the change be passed down the generations?

Yes.

That said, The change isn’t novel to humans. ~16% of Norwegians have it, though only 0.4% of Chinese people do.

How was it reckless or unethical? The kids are fine, they’re probably immune to aids. What’s the big deal?

The gene CCR5 encodes for a protein that one strain of HIV uses to enter cells. These kids may (depending on how accurate the editing actually was) have reduced susceptibility or even immunity to _that strain_ of HIV.

However, this CCR5 mutation has also been shown to worsen outcomes for other diseases (influenza, west nile, certain forms of encephalitis). And it almost certainly has other effects, in isolation or with other gene combinations, that haven't been discovered yet. The human body is _incredibly_ complex and we are nowhere near a complete understanding of the genome.

To make this kind of change without the consent of the patient, or a full understanding of the effects, or a way to turn it off, or a way to prevent it from being inherited by descendants (short of doing another round of CRISPR on each descending embryo) is incredibly reckless and unethical.

So this change to the DNA exists naturally and occurs without the consent of those born with it?

The change that has been studied is a naturally-occurring 32 base pair deletion of the CCR5 gene (see https://www.google.com/search?q=ccr5+delta+32). In the literature, this allele is called CCR5-Δ32, and it modifies the expression of the CCR5 protein by, among other things, eliminating the receptor used by some HIV strains.

He Jiankui intended to use CRISPR to effect CCR5-Δ32, but didn't succeed; instead, his use of CRISPR made other, never-studied-before mutations to the CCR5 gene.

Will those mutations result in a CCR5 protein which confers HIV resistance? Probably, at least to some strains, since as far as we know, the full CCR5 gene is needed for an HIV-compatible receptor on the CCR5 protein.

Will they have other effects? What is their safety profile? These mutations have never been studied before, so no one knows.

See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6813942/#__p275 for more on this.

Yes, just like autism.

CRISPR right now is way too inacurate to be used in anything else but lab experiments and plants. A similar experiment with gene editing yielded apparent success in 3 out of 45 human embryos. Who knows what other abnormalities will be detected later in life.

https://www.statnews.com/2020/10/29/lab-tests-show-risks-of-...

I believe there is a risk that they could be vulnerable to other diseases, like influenza. And maybe more unknown side effects

Also - He forged ethics documents (he did not have his University’s approval) and had a coercive clause in the consent form which meant the patient would be liable for costs if they backed out

On top of that, he did not fully achieve the CCR5 gene edits he was aiming for so the children might not even be resistant to HIV.

If you are interested enough to ask this question, suggest you read more about CRISPR and answer your own question.

It is not possible to say the kids are fine unless you are their pediatrician.

Also it is HIV (the infection) they would be immune to, not AIDS (the syndrome of profound immunosuppression caused by advanced HIV).

We don’t know if they’re fine or if they’re immune to AIDS.

There was no control group or follow up studies.

China has its faults. But allowing an overly interested public to voyeuristcally invade the private lives of its citizens is not one of those faults.

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