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

https://www.thetimes.co.uk/article/jailed-baby-gene-scientist-he-jiankui-should-be-made-responsible-for-the-children-q7s3j9mlf

by acqbu • 4 years ago

59 94 4 years ago

thetimes.co.uk

acqbu• 4 years ago

http://archive.today/2LOd5

gleenn• 4 years ago

Pretty wild, especially also the implications of the children having their own children and passing the mutated genes. I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off?

donkarma• 4 years ago

HIV is a pretty recent disease and the gene that was deactivated serves a useful purpose against West Nile

zdragnar• 4 years ago

I doubt that this gene "only" prevents HIV infection. The unintended consequences of activating that gene could be very diverse, and not fully expressed in any one child. Most adaptations have trade-offs, some quite severe (sickle cell anemia protecting against malaria, as an example).

PragmaticPulp• 4 years ago

I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off?

It’s a gene for a specific receptor that has certain other functions in the body. Certain strains of HIV just happen to use this receptor for viral entry, but it has other functions in the body.

The specific CCR5 mutation has positive effects for resistance to certain HIV strains but actually worsens resistance to certain other diseases. There’s also a big question of how specific and accurate his editing actually was, of course.

_3u104• 4 years ago

The genes aren’t mutated, your genes are mutated as they carry an inferior mutation that lets you get aids.

gwern• 4 years ago

Pretty wild, especially also the implications of the children having their own children and passing the mutated genes.

The implications of your kids each having ~70 de novo mutations just in the course of normal reproduction, which mutated genes they will pass on to their own children, is also pretty interesting.

fabian2k• 4 years ago

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.

_3u104• 4 years ago

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

splatzone• 4 years ago

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

daniel-thompson3• 4 years ago

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.

pyuser5832• 4 years ago

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.

chucklenorris• 4 years ago

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-...

Gatsky3• 4 years ago

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).

suifbwish• 4 years ago

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?

Maursault• 4 years ago

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.

TheMightyLlama• 4 years ago

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

encryptluks22• 4 years ago

I mean this is messed up, but I've seen a lot more widespread abuse in the medical field that doctors and governments supported. Just look at what happened to Rosemary Kennedy. Where was the justice for children lobotomized? Or those used in government research?

danuker• 4 years ago

Stuff of nightmares.

radicaldreamer2• 4 years ago

Not only in the past either, there are ongoing scams where elders are being preyed upon to inject stem cells into various organs (including where they end up blind etc.)

They are entered into bogus "trails" as legal protection for these "doctors" and the clinic.

doctorhandshake2• 4 years ago

Big if true. Link?

elliekelly4• 4 years ago

That other medical atrocities have happened and gone unpunished doesn’t make this one acceptable.

encryptluks22• 4 years ago

That wasn't my point, my point being that if you pay the right people you can get away with it.

The_rationalist• 4 years ago

The martyrs of the future are often the demons of their time

elliekelly4• 4 years ago

Conducting experiments on people without consent does not a martyr make.

bpodgursky4• 4 years ago

Preserving the status quo doesn't make you a hero either.

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?

Barrin922• 4 years ago

embryos are not people. Unless everyone has suddenly turned into an enthusiastic pro-lifer it seems bizarre to me why destruction or termination of children with genetic defects is supposedly ethical, but trying to prevent them is not.

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?

jdrc• 4 years ago

Better to just monitor the kids for side effects of ccr5 deactivation . By the time they grow up gene editing will be common place so i dont think that s something to worry about.

PradeetPatel2• 4 years ago

Is there a set of international guidelines around the ethics of human genome editing?

If so, how are they enforced to ensure nations do not conduct unethical research & in experiments to further their own geopolitical goals?

verisimi• 4 years ago

What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it?

PradeetPatel2• 4 years ago

Seeing that I am not a certified professional in that domain. I would defer my judgement to a committee of experts.

a-dub• 4 years ago

What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it?

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.

saiya-jin• 4 years ago

I don't think they would mean that much when things get personal. Ie you want to have kids but genetic heart disease runs in your family. The risk for down syndrome is 5x the average. And so on.

Or if you are a parent and your child is actually affected, you will go to great lengths to do practically anything possible for him/her. Becoming parent changes everybody.

Your priorities will be very different from say 20-something childless person in such a case.

All that being said, what the guy actually did doesn't make much sense. HIV isn't top priority concern for anybody apart from poorest parts of Africa. You can protect against catching it pretty effectively. But yeah pandora box and all that.

daniel-thompson3• 4 years ago

All that being said, what the guy actually did doesn't make much sense. HIV isn't top priority concern for anybody apart from poorest parts of Africa. You can protect against catching it pretty effectively.

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.

WheelsAtLarge• 4 years ago

Enforcement is very difficult since anyone that wants to can start doing it. It's mind blowing but the tools and materials for genetic work are relatively inexpensive and are mostly unregulated. As far as know-how, it is not restricted either. The field mostly relies on good-will to make sure they do it ethically. Sure there are laws but they are only useful once some one is caught doing something wrong.

Animats• 4 years ago

Why are people so upset about this? Somebody had to be the first to do gene editing on human DNA. I'm surprised Craig Venter hadn't done this already.

Mandatory XKCD: https://imgs.xkcd.com/comics/old_timers.png

causality04• 4 years ago

Yes, my thought exactly. A huge number of things are perfectly legal to do to children that are much, much worse than possibly screwing up an embryo while trying not to. You can get pregnant in your forties by a man in his seventies, drink and smoke while you're pregnant, and after giving birth have part of the child's genitals surgically removed and have their ears pierced. Why is trying to improve their genome where we draw the line?

fartcannon2• 4 years ago

So, because some people treat babies and children badly, no one should question the ethics or consider the ramifications of gene manipulation?

Seems like a stretch.

posnet• 4 years ago

Because for a lot of people, germline editing is the genie in the bottle.

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.

hkt2• 4 years ago

Because of the law on unintended consequences, not to mention the Rubicon that will be crossed when the rich start editing further advantages into the genes of their (already hyper privileged) kids.

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

Gatsky3• 4 years ago

First of all it wasn't necessary. Vertical transmission of HIV can be dealt with in other ways. Why expose these kids to pointless risk? No medical researcher with an ounce of integrity or care would do something like this.

Secondly, it was fraud, the guy falsified documents and misrepresented things.

Thirdly, the whole concept was dumb. It doesn't make any damn sense. He wanted to edit babies for his own reasons (some mix of insanity and ego I presume), so he found a way to do it.

That xkcd is one of the worst ones I've seen, by the way, it also doesn't make any damn sense.

dekhn2• 4 years ago

I had hoped to be the first person to do germline editing in a human (in the late 1980s, as a teenager, that was my goal). I spent about 20 years learning everything I could about human health and the relationship between the genome and visible phenotypes (from molecular to organismal). I concluded that while in principle, you could do germline editing ethically, the technology, and people's ethical maturity are both not at the point where we can do this. Also, if we did it, it would be a group effort not a single scientist acting rogue who didn't even get the details right.

pyuser5832• 4 years ago

As a thought experiment, how would this be handled in America?

There would be a lawsuit. And probably a settlement.

Beyond that, there wouldn’t be any effort to track these kids across their lives.

And medical privacy would prevent any sort of public inquiry.

Best case scenario would be a large lump sum payment to a committee of lawyers charged with monitoring the well being of the children.

I don’t think charging the individuals and institutions that let this happen with “making it right” is a good idea.

This crazy doctor should never be allowed to see these parents and kids again.

bigtones• 4 years ago

Conclusion of your thought experiment rings very true. An example of a similar result is the the case of the Turpin children.

aasasd• 4 years ago

Again, I have to lament that science curiosity in babies is cruelly punished, whereas it should be greatly encouraged.

JoeAltmaier• 4 years ago

Every parent does such experiments blindly and randomly, when they choose their 'soul mate'. Sure this guy was reckless and playing with lives. Like everybody who had children ever.

Are the 'his' children? Not sure. Not sure he should even be in jail. Most parents don't go to jail. Even those that have a baby with genetic defects they knew about before birth, or even before conception because of genetic counseling.

Gatsky3• 4 years ago

Not sure how you can actually write this comment without realising how silly it is. It makes no sense to compare normal human procreation, a process which has evolved over billions of years and has many remarkable features, to this completely unethical and frankly insane meddling in the lives of children.

dekhn2• 4 years ago

Your first paragraph shows an extraordinary lack of understanding of the situation.

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

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