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Just a dash of Mengele
This could be a good meme template.
I’m just here for the comments
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 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.
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
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.
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 imagine if we had 5 more hands; we could make 5 more points.
#thefuture
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.
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…
I know him!!! He featured heavily in that one Walter Isaacson biography, The Codebreaker. About Dr. Doudna of course.
Did he get his PHD? Well, good on him. I see China has a better anti-recidivism program than the USA has. Last I heard, he was doing hard time in Chinese prison for mad scientist stuff.
He got his PhD in 2010, he was imprisoned 2020 - 2023
Haha, well, that shows my reading comprehension level!
Listen I’m generally pro rehabilitation but lete not let embezzlers start banks
Not that I support it in any way of course, but he’s not wrong. There’s probably a lot of medical knowledge to be gained by seeing how the babies he experimented on develop in the future. It’s just that the ends don’t justify the means.
It depends on the specifics of the experiment. Throughout the 20th century, the people most keen on unethical medical experiments seemed the least able to design useful experiments. Sometimes people claim that we learned lots from the horrific medical experiments taking place at Nazi concentration camps or Japanese facilities under Unit 731, but at best, it’s stuff like how long does it take a horribly malnourished person to die if their organs are removed without anaesthesia or how long does it take a horribly malnourished person who’s been beaten for weeks to freeze to death, which aren’t much use.
I’m pretty sure that 80% if what we learned from the Nazi/Imperial Japan super unethical experiments was “what can a psychotic doctor justify in order to have an excuse to torture people to death.”
Maybe 20% was arguably useful, and most of that could have been researched ethically with other methods.
The potential value to the Americans of Japanese-provided data, encompassing human research subjects, delivery system theories, and successful field trials, was immense. However, historian Sheldon H. Harris concluded that the Japanese data failed to meet American standards, suggesting instead that the findings from the unit were of minor importance at best. Harris characterized the research results from the Japanese camp as disappointing, concurring with the assessment of Murray Sanders, who characterized the experiments as “crude” and “ineffective.”
https://en.m.wikipedia.org/wiki/Unit_731
To back up your point that the research gained by unit 731 was useless.
This one was making a child with an HIV-positive parent resistant to HIV, so it’s a bit better than 731 torture.
It’s crazy that people are trying to make this comparison. They are worlds apart. Notice how the post and most people talking about it aren’t discussing what he actually did? Because the situation gets a lot murkier when you learn the details.
“Experimenting on babies” - What?! That’s unethical and immoral! Must be junk science with no benefit!
“Made babies at risk of HIV immune to it” - Well… That’s good for the babies, but maybe he should have gone through proper channels.
“People die if you kill them”
“we weren’t sure, but now we know for a fact”
Eh, usually less than you would expect. We’re really good at math and are quite capable of making synthetic experiments where we find people who either require the procedure, or where it’s been done incidentally and then inferring the results as though deliberate.
We can also develop a framework for showing benefit from the intervention, perform the intervention ethically, and then compare that to people who didn’t get the intervention after the fact. With proper math you can construct the same confidence as a proper study without denying treatment or intentionally inflicting harm.
It’s how we have evidence that tooth brushing is good for you. It would be unethical to do a study where we believe we’re intentionally inflicting permeant dental damage to people by telling them not to brush for an extended period, but we can find people who don’t and look at them.
The current context is modifying babies to make them HIV resistant. How would you model something similar without performing the experiment?
He inserted a naturally occuring genetic variation.
Off the top of my head and not an expert: screen a very large number of people for having that variation, and monitor those that do for HIV infection. That phase will take a while.
Identify a collection of people interested in in vitro fertilization, ideally with some coming from your previous sample group. Since the process produces more embryos than can be used, perform your procedure on a random selection of discards. Inspection and sequencing of the modified segment should be indistinguishable from unmodified embryos bearing then variation naturally.
Now that you have confidence that the variation provides protection, and that you can make the change, identify people where the intervention offers a better chance than not having it, even though it’s experimental. This would likely be HIV positive women desiring IVF who would not be able to tolerate standard HIV treatment during the pregnancy. Engineering the embryo to be resistant therefore becomes the best available way to prevent infection.
You can then look back and compare infection rates with children born to untreated parents and parents who underwent treatment.You also do a better job ensuring the parents know about the risks and what they entail. Informed consent and all that.
If this is really hard to do because you can’t find people that fit the criteria, maybe your research isn’t actually that critical. If HIV medication is essentially universally tolerated in pregnancy and is nearly 100% effective at preventing transmission to the infant without long-term side effects, then it might just be the case that while gene editing would work, it doesn’t provide enough of an advantage to be worth exploring for that disease.
Medical research is still medicine. You’re still obligated to do what’s best for the patient, even if it’s difficult or you’re curious about what would happen.
Testing testing. Running an example instance. Please ignore this OP :>
I SEE YOU
I won’t ignore this.
Damn lol. I’d say call an ambulance for the guy but it looks like he’s already in a hospital
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
Ethics mean we don’t know what the average human male erect penis size is.
No, really. The ethics of the studies say that a researcher can’t be in the presence of a sexually aroused erect penis. Having the testee measure their own penis is prone to error. There are ways to induce an erection with an injection, so they use that.
Is the size of an induced erection the same as a sexually aroused erection? Probably in the same ballpark, but we don’t really know.
Source: Dr Nicole Prause, neurologist specializing in sexuality, on Holly Randall’s podcast.
Having the testee measure their own penis is prone to error.
To be fair, testicles aren’t designed for that task.
a researcher can’t be in the presence of a sexually aroused erect penis
Is this some puritan rule? Plenty don’t care to flap their erect penis in the faces of some researchers if they asked nicely. What got ethics to do with it when there is consent?
A quick trip on Google scholar turns up a lot of studies on the size of male erections.
It is acknowledged that some of the volunteers across different studies may have taken part in a study because they were more confident with their penis size than the general male population.
Ha, poisoned data tho
Sure, they exist, but they have the flaws outlined above.
Of course it was biased, those numbers are huge on there, it was men confident in their size skewing the data, at least that’s what I will tell myself
So wait
Who is telling the truth. My ex said it was too big. The bell curves I’ve found have said “uh what lmfao no way are you that big” but every self reported study says I’m small
How the fuck am I going to ever find a toilet that is comfortable to use in my own home
Switch from a siphonic toilet bowl to a wash down bowl. You’ll get more skid marks, but less dips, splashes and clogging.
How the fuck am I going to ever find a toilet that is comfortable to use in my own home
That was an odd segue
It’s a problem for men with penises that are long when flaccid. Their penises can touch the inside of the bowl when they’re seated unless they hold their penis up.
Never taken an unexpected dip I see?
aren’t there literally studies about the size that only accepted measurements by medical professionals?
Not all erections are sexual-- can’t they just measure the non sexy ones?
if only we had some sort of medication specifically designed to cause an erection
I know that few really care to know more but the situation is much more complicated than the information given. First of all, similar experiments have been done in china with the scientist being celebrated. The scientist He Jiankui was mostly condemned because of the media and public condemnation. His goal was eliminating HIV in the children of HIV positive parents (something so heavily stigmatized in China that you are ostracized and not even allowed to have a child via sperm washing) and he was successful! His methods were unethical but honestly pretty standard for China and he definitely acted in a manipulative manner towards the parents. But this situation in reality has nothing to do with ethics and everything to do with optics. He was jailed because the ccp cares far more about china looking good than one man. More experiments with even worse ethics continue and you’re punished not based on your actions but how people feel when your studies go public.
Didn’t he only treat one of each set of twins, and used a faulty method that has been supplanted?
In addition to all the lying and manipulating the parents to get them to agree and not ask many questions.
Sounds right. I’m not an expert but I did a report on him back in college so I’ve got a a little clear info and a little foggy. He certainly isn’t a good guy but he’s almost never represented properly which is a shame. He was no mad scientist but if people celebrated his accomplishments they just wouldn’t have jailed him.
That’s kind of the way things are done in china imo. It’s kind of a trip visiting and hearing residents drinking the koolaid and pretending to drink the koolaid just to stay safe. I’ve had a few guides with different views on the government. One “extremist” just talked to me about how people are suppressed and the government could be better. Was all about how he’d be locked up and his family doesn’t approve of his views. It’s a different place.
Where do you feel Chinese ethics lack compared to American ethics?
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.
