Documentary spurs a new look at the case of the first gene-edited babies

In all seriousness, all advancements in AI have been around benefiting the individuals utilizing it to better perform. Raising the baseline of what an individual can accomplish by themselves will likely increase what they can do with AI help too.

I would say that in the area of reproductive science, you need to be exceptionally cautious about what's permitted as you are permanently modifying the germline, and society has very strong opinions about that. At this stage of the science you're more likely to cause harm than cure disease (except in a limited number of Mendelian diseases) while also baking that harm into a person's genome so that if they do survive, their children may also inherit that.

(I worked towards germline modification for several decades and concluded, well before He Jianku shat the bed, that we're not ready to do it, and there do need to be some guardrails preventing rogue scientists finding naive parents and getting them to sign inadequate consent forms).

> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?

Genetic modification as such, in the abstract, when therapeutic (fixing some genetic defect that causes a disease) may be licit in principle, but in practice,

1. our ignorance of genetics and non-trivial hereditary effects suggests we should be cautious, not only for the sake of the person whose genes are being edited, but because the change is not localized; that modification may not be transmitted to descendants

2. that embryos are subjects of modification introduces the standard moral problems of IVF (such as the objectification of human beings).

If modification is not therapeutic, then the usual moral problems surrounding designer babies apply in addition to those that apply to IVF. Killing embryonic human beings is intrinsically worse, though the secondary genetic risks are obviously absent.

How would you feel about performing untested gene therapies on healthy babies?

The medical industry seems to be largely divided into two camps: Camp A would happily sell allergy medication that triples your risk of diabetes, and Camp B would rather ten thousand terminal patients die in agony than kill a hundred of them with medication that cured the rest.

It's simply the momentum of the world we live in. It's perfectly legal for a 45 year old woman to get pregnant by an elderly man, then chainsmoke, take caffeine pills, and get shitfaced every day of her pregnancy and create a profoundly disadvantaged baby whose life will be full of hardship. They can even do it on purpose if they want. The powers-that-be don't give a damn about human happiness or suffering; they just want to make sure it isn't them who gets blamed.

…We don’t? Nobody does? Ethicists aren’t cops. Nobody gets arrested by the ethics police or thrown into ethics jail. They have opinions which are then either ignored or supported by somebody in a political or managerial position.

Why would we give cover to the people that actually make decisions about laws by pretending that some stuffy academics are omnipotent?

edit:

> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?

There’s an entire profession of people that get hired to debate questions like that, they’re called… ethicists.

In my view, the greatest indictment possible of many of these so-called "ethicists" is that even as they obsess over non-issues, they make not a word of protest against murdering babies.

The gain from this kind of gene editing is likely much smaller than simply having a bunch of kids with a very genetically fit individual, and that is exactly what rich people do.

I also recall reading that some countries had strategies to foster interaction between very genetically fit individuals, beyond what would naturally happen by the general tendency of people to be attracted to others like them.

People are resistant to any sort of genetic restrictions on procreation for a couple reasons. First, the historical precedent of eugenics is so monstrously abusive that any step in that direction is viewed as dangerous. Second, how would you enforce a ban on procreation of people with genetic defects? Put the parents in jail? Forcefully abort the fetus? What if they don’t know about their genetic condition?

With genetic engineering, it’s a bit more clear. It’s much easier to just not start doing germline editing than to roll back the (unknown) consequences. The harm in not doing that is of course that some people get sick and die, but we can mitigate that with normal medicine. Also the particularities of the case matter here. The scientist chose a questionably effective approach to preventing HIV, a disease that has good treatments. Also he did a shit job informing the parents about the risks. Just bad choices all around.

Doing secret, shady genetic engineering on children is not the same thing as letting people with genetic conditions have children.

You could oppose this because you think it's unlikely to work at all, and so is a dead end and wasted effort. You could oppose it because you think it will work, but that the changes are not likely to be improvements.

Is a procedure that creates a new form of smarter, healthier, longer lived human progress? For them it certainly is. If they deny me that technology for my descendants, is it progress for them?

It is simply not going to break down so easily into "this is progress and progress is good." It will have consequences, some of them negative, many of them unexpected. It will be better for some people some of the time and worse for some people some of the time, like almost all changes are. Resisting change simply to slow it down and better understand and predict the effects is a valid stance as well. None of these things are inherently unethical.

The article doesn’t claim that was the heart of the issue. It lists that as one of a multitude of issues.

Because someone is not outraged by what you are is not evidence of disingenuousness.

Objectifying human beings in such a radical way and arrogantly putting the human germline at risk isn't a real-world concern? You have a very strange grasp of real-world concerns.

As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects.

It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived.

That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.