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I’m just here for the comments
that is also where i place the importance: on the kids and parents. Not the science community nor science councils. Probably why i dont work at a university lab
Hot take.: He is right though.
I am sure you have examples of situations where lower ethical standards led to much faster progress in research.
This is obvious though — currently, you might test a drug on mice, then on primates, and finally on humans (as an example). It would be faster to skip the early bits and go straight to human testing.
…but that is very, very, very wrong. Science of course doesn’t care about right and wrong, nor does it care if you “believe” in it, which is the beautiful thing about science — so a scientifically sound experiment is a scientifically sound experiment regardless of ethical considerations. (Which does not mean we should be doing it of course!)
Now, taking a step back, maybe you’re right that, in the long run, throwing ethics out the window would actually slow things down, as it would (rightfully) cause backlash. But that’s getting into a whole “sociology of science” discussion.
Many kinds of early-in-life medical interventions can have permanent negative effects if they go bad, but nonetheless our ethical standards don’t preclude them. This is a field where the ethical standards are suffocatingly high without good reason. As an aside, we should consider euthanizing newborns who suffer debilitatingly severe negative side effects due to any kind of failed medical intervention (with parental consent, of course). This will directly improve quality-of-life standards and also allow us to lower ethical standards on experimental treatments too.
Unit 731 is the truly horrible source of a lot of modern medical knowledge
Can you explain what Unit 731 has to do with Dr. He?
I doubt it has anything to do with him. My comment was in reference to the context of the post, whereby medical experimentation on humans is being regarded as progress and being held back by ethics.
This could be a good meme template.
Just so you all know what his horrible crime was…
“Formally presenting the story at the Second International Summit on Human Genome Editing at the University of Hong Kong (HKU) three days later, he said that the twins were born from genetically modified embryos that were made resistant to M-tropic strains of HIV.[48] His team recruited 8 couples consisting each of HIV-positive father and HIV-negative mother through Beijing-based HIV volunteer group called Baihualin China League. During in vitro fertilization, the sperms were cleansed of HIV. Using CRISPR/Cas9 gene-editing, they introduced a natural mutation CCR5-Δ32 in gene called CCR5, which would confer resistance to M-tropic HIV infection.”
So imagine a couple where one has HIV but they really want to have a baby. He basically made it so their children were hiv free and then immunized them (edited for accuracy). In all my Crispr research, this is the story that most caused me to feel the science system had wronged a good person. Literally Lulu and Nana can grow up healthy now. Science community smashed him, but to the real people he helped he is basically a saint. I love now seeing him again and seeing he still has his ideals. Again, fuck all those science boards and councils that attacked him. Think of the actual real couple that just wants a kid without their liferuining disease. Also I love how he isnt some rightwing nutjob nor greedy capitalist. See his statement about this tech should be free for all people and he will never privately help billionaires etc etc.
anyway, ideals. i recognized them when i first came across him; i recognize them now. I know enough about him that I will savagely defend this guy. He isn’t making plagues or whatever. He is helping real people.
But this is what’s wrong with the world. They’d rather make a life, genetically modify it, which by the way will serve the rich, then adopt? OK I guess…
I think gene theraly is a miracle technology that should absolutely be explored more. The thing is, we’re already at a point where we can do it in adults. So doing it on embyros, which can’t consent, is simply an uncessasary moral hazard.
That said, I think the doctor here sort of has a point, which is that medical research is sometimes so concerned with doing no harm that it allows harm to happen without trying to treat it.
Newborns need medical treatments all the time and can’t consent. I agree that the inability to consent should encourage non-intervention – for instance, we shouldn’t “correct” intersex infants’ genitals – but there is a limit to this.
my type of guy. And he still does his research to help people even with the public treating him like it does.
HJK: Many years ago, my mother was diagnosed with Alzheimer’s disease, and unfortunately, there are no medicines available to cure it. There are many more people who are suffering from diseases that do not have a cure, so I want to do something to change it.
CT: Can you tell us about the research that you led around Lulu and Nana that was publicized in 2018? It’s been almost six years since this research was shared with the world, how are they doing now?
HJK: Lulu and Nana’s parents are HIV infected patients and they want to have a baby, a healthy baby, a baby that is not worried about HIV any more. So we took the sperm and egg from their parents during the IVF procedure, using a tiny syringe needle to inject the gene editing formula to the fertilized egg, to change one gene, and closed the door that HIV virus used to enter human cell. We then transfer the fertilized egg from the peri dish back to their mother’s uterus, and after several months, Lulu and Nana were born. Lulu and Nana are five years old now and they are healthy and happy just like any other kids in the kindergarten. I am glad that I have helped two families using my science knowledge.
CT: How did you balance the need for progressive gene editing research with ethics and general public perception?
HJK: Science research must be transparent and open, and should be approved by an ethics committee composed of medical doctors, lawyers, patient representatives, and local resident representatives.
CT: Last month, the FDA approved a new CRISPR gene editing treatment, Casgevy, by Vertex Pharmaceuticals and CRISPR Therapeutics, for sickle cell disease. To give context to the audience, sickle-cell is caused by inheriting two bad copies of one of the genes that make hemoglobin. On top of severe symptoms, life expectancy with the disease is just 53 years and it affects 1 in 4,000 people in the US. However, sources are reporting the gene editing treatment price will be $2-3m USD per patient. First, can you tell us your thoughts on this FDA approval milestone and what it means for gene-editing based medicines? And second, do you see a future where the prices for gene therapies will be lowered, making them more accessible to patients?
HJK: The approval of Casgevy is a great success for science, but not for patients. It cost more than 2 million dollars, and few patients will be able to afford it. This drug also has significant side effects including infertility.
CT: Gene therapies aside, what are your thoughts on the current state of affairs of genomics-based reproductive technologies, such as embryo gene sequencing? How do you foresee reproductive technologies being transformed by genomics in the future?
HJK: Embryo gene sequencing such as PGT-P is not ready for clinic application. Many diseases such as diabetes are influenced by hundreds of genes, and we do not have solid science to determine the risk of diabetes by genomic information.
CT:I see. So you think it’s still a little bit early for clinic use.
HJK: Yes.
CT: What are your aspirations for the next chapter of your scientific career?
HJK: I believe embryo gene editing can help us to defeat many diseases and improve human health. I have proposed a research project, using embryo gene editing to help prevent Alzheimer’s disease, so our next generation will no longer worry about Alzheimer’s. I am going to do it slowly and cautiously, make sure we comply with all local laws and the international ethics guidelines. We are going to do it in a mouse first and we have no plan to move on to human trials. At every step, we will disclose our progress in full to the whole world and post it in my personal social account on Twitter.
CT: Why focus on Alzheimer’s?
HJK: As I said, my mother has Alzheimer’s. So personally, I also have some high risk for Alzheimer’s when I get old, and maybe my daughters are at risk of having it in the future too, and Alzheimer’s has no cure. If this project is successful, perhaps Alzheimer’s disease can be completely eliminated from future generations.
CT: Wow. That would be very powerful if it’s successful – to be able to get rid of a disease in future generations. I have another question. If you could go back in time to 2018, would you have done anything differently?
HJK: I did it too quickly. One thing I did not finish is the health insurance. In the informed consent document we signed with the parents of Lulu and Nana, we agreed to buy additional health insurance for Lulu and Nana. However, after the birth of Lulu and Nana, due to too much negative media attention, no health insurance company wanted to get involved. Now, as an alternative, I am planning to set up a charity foundation in Singapore to raise money to cover any future medical expenses of Lulu and Nana.
CT: Let me know if you have a link to donations for the charity. I’d be happy to share it with interested individuals.
HJK: Thank you. That’d be great.
CT: What are some valuable lessons that you learned over the last few years that you can share with the viewers?
HJK: In the past few years, my wife and daughters were living in a hard time. In the future, I won’t let my family get into the same situation again.
CT: I’m sorry to hear that about your family. Thank you so much for answering all of my questions, Dr. He.
HJK: Thank you.
I applaud how nearly every time he opens his mouth it is something caring about the wellbeing of others and his goals are noble. Where I am critical of He is that he seems to be such an idealist that when he cures these big diseases he assumes the next step is to roll out the cure to all people of the world. I love how he is against the ‘charge 2million per cure’ mentality and thinks cures should be available to all, but imo the risk level of doing a genetic change to the entire population is unacceptable. A single wrong unforseen thing and its like zombie apocalypse. I see from his personality why he rushed ahead and did the Lulu Nana antiHIV thing. Personally I think he should be spearheading embryo science and doing his stuff since his heart is good, but watched over so he doesnt go too far. Let him go farther than anyone else, beyond lulu nana, but watch him carefully so no zombie apocalypse.
I’d like to get in to genetic engineering. When I came across his story while researching crispr, I sympathized with him. He did the experiment in what to me is a moral way. Just going on memory it was like ‘take 4 embryos, edit two, keep parents in the loop and ask which embryo they want’. Complain all you want, but he did no wrong; it’s the public and system that then wronged him. So yeah, of nearly anyone, he is the one who most gets to say ‘ethics ruining science’. It’s ironic because there are tons and tons of unethical science activities done literally every day. But for those to be ignored and instead ethics police to hit him when he did all his stuff morally and resulted probably in two extrahealthy kids… Yeah I agree with him. I think everything should be done morally, but if he is going to be hit like that under the guise of ‘ethics’ then nah. ‘ethics’ needs to be replaced by morals and decency. Literally horrifically murdering people (war) is legal and accepted while him using science, AND CORRECTLY, to protect people from liferuining diseases got the treatment it did? nah. I hope he continues growing and doing more genetic engineering and this time doesn’t share a single thing with the public. He should never give the people that treated him like that a single piece of data. There are ways to bypass the patent thickets if he isn’t selling what he does, especially if he shares no info about it. I support him.
prepares for 200 downvotes
you have my upvote
and my axe
I think a really exceeding important clarification here is he edited the genomes of human embryos, not babies. Babies are already born humans, embryos are a clump of cells that will become a baby in the future. I do not condone gene editing without consent, which is what he did, and yes there is lots of questionable ethics around gene editing but he did NOT experiment on babies. This should be made clear especially in a science based community, memes or not.
Implying that babies are the same thing as embryos is fundamentally incorrect, in the same way a caterpillar is not a butterfly and a larva is not a fly, the distinction is very important.
EDIT To add further detail - One of the reasons this is so unethical is that he experimented on human embryos that were later born and became babies. His intent was always to create a gene edited human, but the modifications were done while they were embryos, not live babies.
I understand what you’re saying, but his experiment allowed the embryos to come to term and be born as human babies. Scientists have worked with human embryos before and avoided similar outcry by not allowing them to develop further (scientific outcry, not religious). Calling his work an experiment on human embryos ignores the fact that he always intended for his work to impact the real lives of real humans who would be born.
Real humans who would be born and could potentially have children, passing whatever genetic edits they have (intended and off-target) into the gene pool.
I totally agree, I do believe what he did was unethical and criminal.
I also believe the clarification on if the experimenting was done on live human babies or if it was done on human embryos is exceeding important. Implying that this was done on live human babies is basically misinformation. Just look at the rest of this thread and how people are talking about this, everyone is discussing this as if its was living, breathing, crying babies that were experimented on, not a clump of cells before they have any type of living functionality.
If anything what you said should be included, he experimented on embryos with the intent of them being born and becoming babies. But it most definitely should not be “he carried out medical experiments on babies”, because that is patently untrue.
By all accounts what he did worked. The potential to end HIV is huge. The amount of human suffering that could be reduced by rolling out what he did is very real.
The technology is here. It’s better to strictly manage it for the public good than to lock it away.
Per the wikipedia page it states that it is not clear if it effective because they’re not going to intentionally infect the children to test it. But we see the results specifically on the targeted gene. That’s a success and demonstrates the technology works.
I’d argue the folly was inserting an artificial gene as opposed to the natural gene that we already know works. Either way the technology showed expression on the correct gene, that is a success.
We’d be having a better discourse on this if his results weren’t banned from every journal and not studied.
Read that section I pasted in again.
“Lulu has only heterozygous modification which is not known to prevent HIV infection.”
It’s not the results are “banned from every journal” - it’s that doing ad hoc CRISPR experiments is not going to meet peer review. Doing random things because you want to see what happens is not how science works.
Having a heterozygous deletion is still effecting the right gene. Without knowing both of her parents genetics it’s hard to say if it was natural. What he did could produce either a heterozygous or homozygous result on the gene, but only the homozygous presentation is effective at prevention.
So 1 was a full success and the other showed activation on the appropriate gene, but not enough to confer resistance. Although it is possible it does since he used an artificial gene. We know the natural one is not effective in a heterozygous presentation. I still think that was his greatest mistake. He should have just used the naturally effective gene.
You do make a good point with the full backing rigor of the scientific method this procedure would always be successful.
You do make a good point with the full backing rigor of the scientific method this procedure would always be successful.
What? Even highly effective treatments with ample research backing will not “always be successful.” (Not just in genetics. Across the board.)
Again, as the excerpt I copied in shows, there are also RISKS with CRISPR. Things like mosaicism, things like half of your cells having the modification and half not.
Do you have any background in biology? Can you explain why a gene that only conveys resistance in a homozygous genotype would be magically effective in a heterozygous because it was artificial?
Can you define the terms “homozygous” and “heterozygous” even?
By all accounts what he did worked
What “accounts” are you reading? You need to read more accurate accounts, because what he did didn’t work and the experiment wasn’t very useful.
Seems like splitting hairs, at best, for you to claim the three edited human babies who were born from this experiment aren’t part of the experiment. He fully aimed to study them and they are still being scientifically monitored.
He also had a bizarre contract he made the parents sign that if they changed their minds they had to reimburse him the financial costs of the experiment.
He also had a bizarre contract he made the parents sign that if they changed their minds they had to reimburse him the financial costs of the experiment
Here’s a scenario.
- Parent gets modded baby
- Parent is approached by a corporation to take over the baby for their exp instead
- Corporation is willing to pay parent for it
- Parent later goes and says no to Dr. He
- Parent takes baby to the corporation instead, which now gets to step ahead of Dr. He
- Dr. He gets no resultant data but is stuck with the costs of doing whatever he did.
Watch Star Trek
Dr He’s dream of baby gladiators cannot be hindered by whiny-don’t-make-the-babies-fight so-called “ethics”!
Imagine what the world has lost
“Speed limits are holding me back from getting from a to B in as little time as possible” yeah, and they reduce the likelihood of injuring/killing a people in the process.
Then why isn’t the speed limit 0 everywhere? Speed limits are a balance between two opposing concerns.
In this case, ethics is holding back life-saving treatments. Ethics boards should approve gene editing more than they currently do.
I’m not arguing that ethics boards cant be overly stringent. But there’s a reason we have them in the first place and that still doesn’t make it alright to start conducting unauthorised experiments on people.
Even if it turned out OK in this case, and we still can’t say that it definitely did, the next person who trys to pull a stunt like this might not be so lucky, qualified, or knowledgable.
What’s the alternative here?
yeah, but, consider: I really want to get to point B. like, so badly. and I’m pretty sure I’m a good driver.
Is nobody concerned that illegal experiments on babies only gets you 3 years?
Maybe they were Uyghurs so it was classified as “property damage” in Chinese law.
“Illegal experiments on babies” is a user-provided note, and is not really an accurate label. For one thing, no experiments were done on babies.
Another thing – unlike “murder,” there is a gradient of what constitutes an “illegal experiment.” The phrase “illegal experiments on babies” sounds terrible, but if you imagine a volume dial on this crime, one could lower it until one finds the minimum violation possible which could technically be described as an “illegal experiment” – for instance, flicking a baby with your index finger to check its reflexes. So it should not be of any surprise that there are such things as “illegal experiments” which are so mild as to warrant just 3 years in prison.
https://en.wikipedia.org/wiki/He_Jiankui_affair
Laws were changed after this incident:
In 2020, the National People’s Congress of China passed Civil Code and an amendment to Criminal Law that prohibit human gene editing and cloning with no exceptions
So, in case you actually meant that weird ignorant remark you made about Uyghurs, the answer is no and no.
Lemmitors downvoting you because actually learning about the case conflicts with their “cHiNa BaD” circlejerk.
Oh shit someone tell the
fascist scumliberal toads that its actually blue on blue, this guy was working for a honky kong universty!!!Thanks for the information – good to know. I assume that like American law, he couldn’t be punished for something that wasn’t illegal when he did it?
Regarding the Uyghur comment the other guy made, definitely a bit tasteless but I don’t think it’s that ignorant given the genocide China perpetrated against them.
What he did was illegal. Even without specific laws about genetic modification or cloning, he did perform experiments with babies without the necessity approvals from ethics and safety, without informed consent from the parents and likely misusing funds allocated to other research.
3 years is still to short.
he couldn’t be punished for something that wasn’t illegal when he did it?
I don’t think CCP cares about the principle of no ex post facto punishments.
Source: My racism
“If everything else fails, pull the racism card”
Source: the ml handbook
Yeah I do assume racists are racist when they pull random claims that non-white countries are ontologicaly evil with no proof, it shows the racists bias.
Or Russia! Remember that saying anything bad about Russia is also racist.
Or maybe it’s not the color of the skin what the issue… But that would mean independent thinking, which is frowned upon by tankies. I’m assuming you’re a tankie because you say things a tankie would say. It’s generally a very weak way to make assumptions, but given it’s exactly what you’re doing, seems only fair.
It was a joke… You don’t get to jail for experimenting with slaves in China.
The devil is in the details…
You are likely thinking (as I am) that he implanted robotic arms on babies but he may have just rubbed sage oil on them for all we know
He used CRISPR to make babies immune to HIV.
No, he inserted a gene that is associated with resistance to HIV, but is also associated with increased risk of some cancers. He did this without informed consent, he did this without running it by an ethics board, he did this without knowing whether it would work or not.
Let’s stop pretending that he’s a good guy that just magically made HIV immune babies.
Edit: it also didn’t work. The babies have genes both with and without the mutation.
We also don’t know if it was just that gene that was altered, or if there are other effects. Modern gene editing isn’t so precise that we can edit just the gene we want. A lot of genes with similar sequences as the target can also be affected.
It’s basically like firing a shotgun at the house they live in. You might hit the one you want, but you may also hit other unrelated genes in the process.
Diabolical
Thanks for the info
definitely on the evil side considering he probably planed to infect them to test his theories
Nope, he had no plans to infect them. The babies had parents who were HIV-positive.
Did not have baby zombie apocalypse on my Bingo card, but there ya go
Be careful, you might get banned from lemmy dot ml for hatespeech against dictatorships.
It’s literal misinformation, so it probably should be removed, yes.
Hong kongs a dictatorship? You know, the place this doctor was working?
Well observed, its been an apartheid state since its inception as a colony to the UK.
I’ve blocked that instance, but if they need more material to ban me I have it.
Depends how successful the experiment is (and probably on what the goal is as well).
If he’d been testing the effects of grass vs grain feed on human fat marbling, I’d imagine the sentence would have been a little more severe
Dang, you can really just pull shit straight out of your ass and people will believe it.
lemmy dot ml
Yes, .ml users do indeed tend to be more concerned with fact-checking and saying things that are actually true as compared to flat.world, thank you for pointing that out.
And China executed a shitload of people for political dissent…
I think the only thing that deserves clarification is if he broke ethics to do biomedical research. It sure seems he did. There’s ethics approval in any study for a good reason.
