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Better build a research base on Mars where legal and ethical limitations don’t exist. And IDK, start researching teleportation or something.
Preferably just die because you opened a portal to hell or something.
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.
Mengele vibes right there.
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…
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We don’t need to compare the two, they both considered atrocities horrific beyond comprehension.
I am pretty sure that NASA would unjokingly agree with you on that.
That borders on Holocaust denial to even try and compare the two
Protogen has entered the chat
owo
not that protogen unfortunately
uwu
👁️👄👁️
deleted by creator
That’s actually pretty the whole premise of The Vital Abyss short story. Cortazar explains how he signed up with Protogen and how glad he was to get the nerve staple that removed all empathy from him. Ot, and all the other short stories are worth reading if you liked The Expanse
Made the Eros comparison just a few comments above!
They were dead anyways (thanks to Protogen releasing the protomolecule), the real tragedy would be to let their deaths be in vain…
Do you want BioShock? Cuz this is how you get BioShock
Or Vault 4.
Eros in the Expanse.
That shit still makes me angry and it’s fiction
Holy shit, this guy managed to have more 3 of the first 10 papers listed on google scholar about his shenanigans.
Damn lol. I’d say call an ambulance for the guy but it looks like he’s already in a hospital
Testing testing. Running an example instance. Please ignore this OP :>
I SEE YOU
I won’t ignore this.
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 think you’re suffering from a form of justification bias. That sounds like something out of a dystopian sci fi.
Here’s the MUCH more realistic scenario that makes his contract unethical:
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Scientists try to introduce mutation into embryo
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Mother for whatever reason decides she doesn’t want to have the embryo implanted.
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Who knows, maybe they can’t afford kids. Or her and the father are about to break up. Or she has found out she’s at risk of complications.
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Or maybe they overhear that the experiment didn’t go as planned and the mutation is useless or possibly harmful.
Anyway if they say no they’re suddenly in debt millions of yuan.
Implanting an embryo into a person under those conditions would be coercion.
Mother for whatever reason decides she doesn’t want to have the embryo implanted.
Who knows, maybe they can’t afford kids. Or her and the father are about to break up. Or she has found out she’s at risk of complications.
I think I am just suffering lack of information.
I assumed the contract is to be an after birth thing and not something that makes sure that the mother has to bear the child.
Besides, if the implantation is not done, hasn’t He not actually done the procedure and can choose another (although hard to do so in time)?
Does the embryo have some kind of compatibility with the mother, for implantation to be successful?In case He has the option to find another chap for the process in the above cases, I won’t consider the contract extending to this time.
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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.
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.
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.
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))
Obviously the notable, unusual, unethical thing here is the non-consentual gene editing, not the mere occurence of birth
I am trying sooo hard to come up with a point without bringing up the chemical-transification of children, without their parent’s approval, which has been following them being mislead by pro-trans (as in “go become trans because all your problems are your gender”) evangelists.
My apologies, I didn’t realize I was speaking with a lunatic.
Just with someone who remembers how easy it was to be mislead by adults, as a child.
Wasn’t he the guy who was trying to find a way for HIV-positive couples to have HIV-negative babies?
Antiretroviral therapy for pregnant women already is a safe and effective way to avoid HIV transmission to the baby. It’s part of standard treatment guidelines https://www.sciencedirect.com/science/article/abs/pii/S1701216324003748
So the guy has genetically engineered babies as a potentially risky and certainlycontroversial solution for a problem that already has a safe and non-controversia solution.
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.
Watch Star Trek
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 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.
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
