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.
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?
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.
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.
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.
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
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.
> 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.
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.
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?
> 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.
Any self-proclaimed bioethics "expert" in the morality of this field has no more context on the ethics than you would have after an afternoon of browsing wikipedia and thinking about it carefully.
(obviously the actual scientific experts have more context on the what and how, but that's not the question)
>Nazism is a spiritual disease and one i would be happy seeing continually wiped off the face of the earth.
Not sure if this is a joke, but the idea that removing people from earth due to their belief of who should be removed from earth seems a bit of a moral pickle, or at least a self perpetuating people-removal-machine.
>>Seeing that I am not a certified professional in that domain. I would defer my judgement to a committee of experts.
>This is how eugenics happens
I am astounded at the simplicity and the speed at which eugenics can happen. Can you provide links, I would learn more of this rapid process in hopes of learning how to defend against it.
A quote from feynman:
"Science is the belief in the ignorance of experts"
Also eugenics is literally the belief that the genome can and should be improved via intervention beyond mate selection. Which you already hold. If you are incapable of seeing the connection between "we should be allowed to edit the genome" -> "we should improve the human genome" then i doubt you are engaging on good faith and im concerned about your elementary mental capacity
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?
> 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.
> 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.
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).
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.
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.
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.
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?
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.
TL;DR: The grandparent's source is a load of horseshit, and it seems evident an agenda is being pushed.
The grandparent's source came from a person going by Manul Ashwadka [1]. I've added their comment in specific and as we can also see from the link that Manul's sources are from his own posted studies [2] (a guess based on the published initials on Zenodo) which from what I can gather is not peer reviewed.
Further more, in an attempt to find out more about the author of the paper, the link to his/her/their blog as found on a hyperlink from Zenodo leading to ORCiD results in the following (now defunct) webpage: https://fight-against-gates-new-world-order.mozello.com/blog... [3].
With this avenue blocked, any publicly information we can find about Manul Ashwadka (whom I suspect is the same as M.A.) is their posts on Quora which essentially devolve into accusing Quora of censoring posts for disagreeing with the Biden administration, justifying the Russian Federation invasion of Ukraine, blaming Dr. Fauci for creating the pandemic, blaming the US for a variety of things, etc...
The comment above by verisimi was factually incorrect. The Pfizer vaccine contains MRNA. MRNAs are short-lived nucleic acids (not DNA) that exert their function in the cytoplasm of the cell (not nucleus, where DNA lives and Cas9 exerts its' action) and are used to translate proteins. The proteins coded for by the MRNA sequences in vaccines (Pfizer, Moderna) code for the S1 spike protein, which occurs on the surface of the SARS-CoV-2. After their translation, these proteins are then recognized as foreign by the immune system of the host (i.e. person), leading to an immune response. There is no Cas9 enzyme in MRNA vaccines.
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?
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.
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.
The same argument holds for every technological advance. "Why build the world wide web when only the rich can afford home computers" and "why develop electric cars when only the rich can afford them". We live in a capitalistic society and therefore almost every advance will be available to the wealthy before it's available to the rest of us. That's not a good thing but it's also not a reason to stop improving ourselves. I would rather give the one percent another advantage than sit here smug in my knowledge that hey, millions of children might suffer needlessly from type 1 diabetes or cystic fibrosis but at least Donald Trump the fourth has to pay somebody to take his exams for him instead of using his artificial eidetic memory.
I wonder if the problem is this breaks the American dream. Americans see themselves as potential future bilionaires and they tell themselves they're just as capable as the rich, but if the rich become genetically superior, it creates a gap that clearly can't be overcome.
This already exists. The rich are less stressed and happier. They have absurd nepotism and social connections. They don't die of curable diseases or from lack of treatment. Their children are better educated and less traumatized growing up. Of all the advantages the rich have, genetic modification is one that could be reduced in price enough for the middle class to afford.
What does and does not constitute a disease is relative. Mental infirmity is a disease. Aging is a disease. Death is a disease. We participate in the comforting delusion that because these things have never been challenged before that somehow makes them less horrifying. Screw that.
That is a total straw man. The argument is that as a society we permit people to do lots of things to their children that have far greater ramifications that this gene editing. It is there for inconsistent to get upset about gene editing but not these other things.
It doesn't matter if it's inconsistent. If "lots of things" are immoral but permitted, and gene editing is also immoral, the correct conclusion is that all of them should be prevented.
If the opposite is true - that if "lots of things" are immoral but permitted, things that are equally or less immoral should also be permitted - then you're arguing for more forms of child abuse to be legalized, in the name of "consistency".
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.
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.
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?
I agree that embryos are not people. However, modifying the genome of an embryo that you intend and expect to become a human is modifying the genome of that human.
Therefore, if it would be unethical to do it to the human, it’s unethical to do it to the embryo.
Why is modification of someone's genome unethical? If you could get gene editing right now to never contract HIV that would simply be a very effective medical treatment.
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?
"HIV resistance" is a false reduction of the gene editing that went on. Those genes that were edited encode proteins that the body uses for other things, and thus can have potential consequences, when changed, that nobody was able to consent to.
Sickle-cell trait is in ~5% of people, and it's a natural mutation against malaria, but that doesn't meant mean it's ethical to inflict its consequences on someone without their consent.
Hopefully the mother consented to it. Mothers also consent to mixing their genome with the father's genome. It don't see why this would be different with edited genomes.
I’m not sure what you are arguing about. There is a process to decide if a medical procedure is ethical or not. It involves an ethics board where people who know much more about both ethics and the proposed procedure than the average HN commenter make a decision. If you feel this process did come up with bad decisions please elaborate. But the researcher in question didn’t bother to get a decision, just falsified one for himself. That doesn’t sound right, really.
In Hitler's Ethic Weikart helps unlock the mystery of Hitler's evil by vividly demonstrating the surprising conclusion that Hitler's immorality flowed from a coherent ethic. Hitler was inspired by evolutionary ethics to pursue the utopian project of biologically improving the human race.
Further- if we use dynamical system theory and look at coastal engineering-when we apply a control (say a barrier wall or "groyne" at the beach, to retain the nice sand) mother nature with time will work around it (the sand is carried by the tide and waves to carve out of the beach and deposit on the back of the retaining wall)
https://www.researchgate.net/figure/a-The-terminal-groyne-sy...
Engineering nature properly requires a liberatory embrace of differentiation, diversity, and ultimately futility. The natSoc obsession with systemic perfection and crystallization leads somewhere predictable, and we rightly stamped the movement out (though many of the doctors worked w and moved to the US, and allies have had their share of eugenic fantasies and doctrines).
We need to wake up from the childlike belief in the infallibility of scientism.
As Richard Feynman put it:
"Science is the belief in the ignorance of experts"
> We need to wake up from the childlike belief in the infallibility of scientism.
What I’m talking about is not scientism. In medical research and medical practice ethical questions come up all the time. Someone has to make a decision about these questions. I personally don’t have the time nor the resources to adjudicate all of these questions, therefore I have to trust the decision of some proxy on most questions. Trusting a group of people who care about ethics, and know about medicine is a good proxy (the ethics board).
This doesn’t mean that I believe them infaliable. If you believe that a particular ethics board in a particular case made a bad call let me know. Identify the case, tell me what the board decided and what you think should have been decided and why. I promise you that I will use all my faculties to learn more about the case and make a decision of my own if possible. Does that sound like scientism to you?
That being said this is a complete non-sequitur in the present case. The article is not about an ethics board who made a bad call. It is about a researcher who skipped the whole process and decided that he alone is enough to decide what is ethical and what is not. That is very suspect in itself. Furthermore people think that he made the wrong call, and what he did was not ethical.
Are you arguing that the ethics board system is so faulty that he was right to ignore it?
Are you arguing that he made the right call in thinking that this particular intervention is ethical?
Thanks for your take! I have more faith in the internal compass of people taking things seriously than i do in outsourcing ethics, but this doesnt mean that i conversely trust bad actors.
Surely not advocating for the latter, i think informed consent and voluntarism should be required. Personally not sure where i stand on some of the leading edges of genetic tech, but i also appreciate that there likely are arguments for development akin to atomic science. My hope is that we can continue to support and synthesize a broad spectrum of humanity rather than a few quantifiably valuable breeds. Im biased since i have a sibling with disability who i value more than the ethics boards that will triage him off of a ventilator :)
When you don't understand the science yourself and can't properly weigh the risks / benefits it seems fairly reasonable to rely on experts.
In this case, the parents likely did not have the information necessary to make a decision about their own offspring (especially since they were lied to).
As far as legal/societal decision making, I don't think we have a better solution than relying on experts. What is the alternative? Unless you are only talking about using personal morals for the purpose of discussing right/wrong rather than actually making decisions based on them.
Well, they seem to have done so, as have many believers of scientism. As well as the doctors who forcible sterilized and lobotomized undesirables.
WE certainly cannot though. Humanity needs some of us to keep true north.
