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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.
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.
Unfortunately, research on prisoners and concentration camp victims did produce new valuable medical information.
Most of the field of gynecology is based on experiments done on women slaves, where the “doctors” decided their victims conveniently didn’t have nerve endings.
Ethics throttles research.
But I am aghast at the thought that we should permit unethical research in the pursuit of, at the end of the day, greed.
And I say this as a professional scientist.
I can’t believe this conversation is even necessary.
What really pisses me off is how many people consider ethics optional, especially when it suits them. Ethics are not optional. They are not meant to be.
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.
This could be a good meme template.
To all the commenters saying this guy was a saint for doing what you did, would you say the same thing had the outcome been disasterous? Babies born without HIV, but with constant excruciating pain or mental deficiency.
He took an extraordinarily reckless and permantenly life-altering, for good or bad, risk with children’s lives.
The good old adage: “you don’t have a gambling addiction as long as you keep winning”
This is very hypothetical. You could make the same argument about any experimental medical intervention in a child’s life. If I had the choice of being born with HIV or an experimental procedure with some (how much?) chance of risk, I’d chose the procedure.
You could make the same argument about any experimental medical intervention in a child’s life
Yup, and there’s even ethics review boards convened solely to analyze that argument with the particulars of a case and rule whether the treatment is okay to go ahead. This guy played god without approval from this review process and deserved the time served.
would he, as the God curing the hiv, be more or less moral than the God giving the hiv?
The power to enact change is not a 100% bad thing. It only looks that way because of rampant corruption. There are good people in the world too. It is the good people who should be powerful. Keep in mind he is not developing something for a monsanto patent thicket; he is curing diseases without it being tied to nor profiting big pharma
Okay, I do relate to this argument. It’s the ethics review board’s decision and not his to make. Fair enough. In this case, I am disappointed by the ethic review board’s decision, which is why I sympathize with the doctor.
A lot of geneticist are DEEPLY against trying these things. This guy’s lucky so far in that his actions haven’t caused serious problems, we really don’t know how adjusting genetics can backfire, but according to the professionals the risks are very very high.
it aint luck. he did it right
Sure lets just torture all the poor people so a handfull of rich fucks can afford stem-cell-zinfandel, never mind that 100,000 people were tortured and killed, at least we discovered a new anti-wrinkle cream. If you don’t think that’s what it always is in practice you’re delusional. Shit like that is just as likely to cause mass disease or our extinction than it is to discover something useful, perhaps even more so
Who are you even responding to?
He also did actual time for it and everyone involved was banned from practicing medicine in China, even despite the fact they are the core of CRISPR technology at the moment, they still care enough about ethics to not support this.
Seems like a case of one rogue team of people deciding what they where doing was for the moral good and then the state checking them.
We can still see the initial intentions as being morally good, and the outcome of it being gray but punished; its a balanced perspective; a lot of people here seem to have the impression it was approved by the CPC when it wasnt.
We can still see the initial intentions as being morally good
Ah, yes… the pavement of the road to Hell.
This is a universal criticism of doing anything which is intended to be morally good.
Good thing the CPC put a roadblock on that path and diverted us back into the morally grey middle road then.
This is the moral dilemma.
The whole Grimdank universe of just randomly testing things on people to make humans genetically more superior will absolutely improve life for future humans. No question. On paper anyways.
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. So instead of condemn the child to potentially a short miserable HIV life, he basically made it so their children were healthy. 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. Those science boards rather their kids suffer and die. Nah. Help the people. 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.
This is pretty much all incorrect. CRISPR didn’t have anything to do with Lulu and Nana not being born with HIV, we have known how HIV-infected men can safely become fathers for years now. The standard practice of “sperm washing” and IVF ensured that, CRISPR was completely unnecessary.1 The reason the parents accepted He’s plan is because in China, HIV positive fathers are not allowed to do IVF regularly.2 Chinese often go abroad to get IVF done, but presumably, these parents couldn’t afforded it. Not to talk about how He completely disregarded informed consent, giving them 23 complex pages, barely mentioning that they were doing gene editing, representing the whole thing as a "HIV vaccine"3
1: https://www.pennmedicine.org/news/news-blog/2017/june/how-hiv-positive-men-safely-become-fathers
2: https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/
3: https://pmc.ncbi.nlm.nih.gov/articles/PMC6490874/#pbio.3000223.ref008
Also i havent researched the validity of the ivf not allowed in china stuff, but I don’t consider it a bad thing He giving the parents an avenue to a hivfree child when they otherwise are assumed ‘too poor’ to be able to do it. In fact that totally matches his statements about cures should not be paywalled; and i agree with him. Good thing for the families he was doing this experiment. Now they can have an hiv free child where they couldn’t before.
hilarious. and those arent even the most aggressive articles. nice twisting words too. Anyway, for people reading, there are many contradictory parts of He’s case depending where you look.
heres a much less biased telling of events. No it doesnt 100% support He being a saint. it isnt that biased nontrustable trash tho "As the couples listened and flipped through the forms, occasionally asking questions, two witnesses—one American, the other Chinese—observed. Another lab member shot video, which Science has seen, of part of the 50-minute meeting. He had recruited those couples because the husbands were living with HIV infections kept under control by antiviral drugs. The IVF procedure would use a reliable process called sperm washing to remove the virus before insemination, so father-to-child transmission was not a concern. Rather, He sought couples who had endured HIV-related stigma and discrimination and wanted to spare their children that fate by dramatically reducing their risk of ever becoming infected.
He, who for much of his brief career had specialized in sequencing DNA, offered a potential solution: CRISPR, the genome-editing tool that was revolutionizing biology, could alter a gene in IVF embryos to cripple production of an immune cell surface protein, CCR5, that HIV uses to establish an infection. “This technique may be able to produce an IVF baby naturally immunized against AIDS,” one consent form read."
funny how things can look so different according to what side u are on. tho im not even going for pro He articles, just neutral or interviews. As far as your hostile ones where they weaponize anything they can… (reminds me of politics) the part I find sillyest is when they complain how He only successfully did the full mutation to one girl so the other may not be immunized. Like it’s bad he did it but also bad he didnt do it enough. lol. its exactly like politics. anyway, i personally ignore that type of article in politics too. use them to persuade yourself tho if u want as long as u dont hurt anyone
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…
On one hand, crispr isn’t safe. And life is not something people have a right to create - that tremendous imposition should be met with a responsibility
On the other hand, life is treated as cheap almost everywhere. If we’re going to force people to justify their right to exist, why not take a chance on their genetics to improve the species?
I mean, this was risky science, but not reckless. At some point we need to start fixing our genome, or we’re just going to poison ourselves to extinction
And life is not something people have a right to create
Yes they do?
Having children is literally the one thing most of us are equipped to do, and those who cant can adopt; the children of the future are our responsibility to raise. You seem to have a pretty self centered and unrealistic idea around child rearing; people raise children through invasions, unless you want to stop people from fucking somehow you’re never going to stop reproduction.
Most of us are equipped for rape and murder, but we don’t have a right to it.
Thats why we have laws against rape and murder but not against having kids, because that would be eugenics.
“because that would be eugenics” is not an explanation. You’re just asserting that eugenics is bad, which is begging the question – this is a post about the ethics of eugenics. You can’t just come in and say “eugenics is bad because it’s eugenics.”
Anyway, I don’t think anyone is calling China’s former One Child Policy eugenics.
Thats because the one child policy was coerced by the IVF in order for China to survive during a period of economic isolation, more so the one child policy only applied to han Chinese, and many still choose to have children, it wasn’t a ban on having extra children, they where just heavily disincentivized and given access too birth control.
Literally banning who can have sex would be eugenics yes
I don’t really see a strong difference ultimately between “heavily disincentivizing” and banning. Heavy disincentivization basically means the rule only applies to poor people. If it’s eugenics, it’s probably still eugenics even when limited to the poor, since most eugenicists would broadly consider wealthy people to likely have good genes.
Anyway, there are times when we should attempt to lower birth rates as a society. In my country it’s not needed, since the birth rate is so low.
and imagine if we had 5 more hands; we could make 5 more points.
#thefuture
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
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
Watch Star Trek
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.
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.
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.
I have talked to some Americans who claims that sperm + egg = baby and I want to place an egg in front of them and ask them what it is and if they say anything other than a chicken, I will laugh.
Also, thank you for the distinction. Kind of insane to call embryos babies. It is shit like this that makes me feel like my brain is shrinking when I talk to some people online.
They became babies when they were born with experimental modified genomes without their consent
Babies are conceived without their consent.
In case of a C-section, they are born without their consent (implying that they would rather grow up inside the womb :P (look, idk what babies think when they don’t come out, but we sure aren’t asking them whether they’d rather stay in there))
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.
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.
I disagree and think you are getting too caught up in semantics in this case. Can I put cats and mice in separate rooms, with the intention that the cats can find a way into the other room, and claim I am only doing an experiment on the cats, even once they get through and start killing the mice?
What if I had a woman take some kind of drug during the first 3 weeks of pregnancy, with the explicit purpose of seeing what it does to the baby when it’s born. Can I say, no, no, I was experimenting on a woman and a zygote/blastocyst, not a baby!
You don’t get to just remove yourself from the result. If he did something that made the baby be born in a way that’s different to how it would have been born, in my mind that is a direct experiment on the baby, just via indirect means.
You can say the title isn’t specific enough for your liking, but by my standards it isn’t wrong or misinformation. He conducted an experiment that directly affected the lives of babies. That IS an experiment on the baby, regardless of the method used to perform the experiment.
Its is semantics, but also this is science and semantics are important. If we want to get really in to semantics we should say the experiments were done on humans, as the embryo, fetus, baby, toddler, pre-teen, teenager, and adult are all phases of the human life cycle and this experiment was done to produce genetically modified humans. Even CRISPR experiments refer to the organism model when experimenting, not the life cycle phase, unless it is specifically part of the experiment IE: in vitro vs In vivo
Saying the medical experiments were done on babies specifically is for the shock value, and it works, look at the reactions it gets. This should be a hotly debated topic, people should be concerned about the ethics of gene editing and how it is regulated. This experiment was not ethical in anyway and it was criminal, but using hyperbole to inflate the shock value for engagement is also not the way to communicate how unethical and criminal this is.
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.
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.
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?
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.
Mengele vibes right there.
That borders on Holocaust denial to even try and compare the two
Well, the nazis did make a lot of scientific progress…
/s, just in case
The nazis were ethical compared to what was happening at Unit 731…
doesn’t get enough attention, true, but both are so far over the moral event horizon, anyone who tolerates either one living should be shot.
We don’t need to compare the two, they both considered atrocities horrific beyond comprehension.
