Jailed baby gene scientist ‘should be made responsible’ for the children

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

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.

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.

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

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).

no ethics committee would ever approve transgenic human embryo experiments.

this also sounds really stupid. like there's no real science there, just a willingness to overstep ethical bounds in the pursuit of fame and fortune.

meanwhile, it sounds like actual scientists are exploring crispr/cas9 approaches to curing hiv infected persons.

Correct. It makes a lot more sense IMHO if you imagine that his motive might have been less to protect them from HIV and more to get his name in the history books.

Seems like a stretch.

Specifically once it becomes accepted for morally justifiable things, like curing horrible genetic diseases, it will quickly start being used to alter non life threatening things.

And we will quickly find ourselves in a world where parents are able to alter the future children's height, intelligence, muscle mass, sex, race, sexual preference (These are purposefully extreme examples that are likely many decades away from being possible). But in terms of why there is moral outrage, those are the sorts of things people are concerned about.

I would say that from the reading I have done, the concern that it might be done improperly and accidentally cause negative mutations harming the child is more of a practical one (we don't understand the genetic processes well enough to perform the editing safely yet), rather than the moral one outlined above.

It is a recipe for a medical or social disaster. Perhaps both.

HIV resistance is optional, sure. What about conceiving a child with sickle cell anemia? Why is that more ethical than trying to give a child a healthier life?

We do a lot of medical treatments on children without their consent. There are now (experimental!) open-heart surgeries of children in the womb. Is that unacceptable too?

By definition unborn children or infants cannot give consent. That has never been the basis for denying them medical treatment, including experimental ones. And in the entire history of medicine no established treatment exists without experimentation.

If this is even remotely successful you may be looking at millions of lives saved by preventative HIV treatment in regions where the disease still kills millions.

A 40 year old woman getting pregnant probably poses higher risks for their offspring than a lot of genetic experimentation. Is there any risk basis for these arguments or are people just apprehensive about gene-editing due to some naturalistic dogma?

Just to think through this, people with Huntington's can, with a 50% chance, bring kids into the world who are doomed to basically die of a horrific disease, that's considered the personal right of parents. But the same parents couldn't subject some cells to treatment to attempt to prevent this, that's unethical?