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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
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and those arent even the most aggressive articles. Anyway, for people reading, there are many contradictory parts of He's case depending where you look.
thanks i agree i had the 'kids would have been born with hiv otherwise with no alternative' part wrong. good correction. I have edited my comment accordingly. He removed the Hiv with one procedure and immunized with the other.
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.
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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.
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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.
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and imagine if we had 5 more hands; we could make 5 more points.
#thefuture
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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.
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my type of guy. And he still does his research to help people even with the public treating him like it does.
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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
I believe if I do not publish my main book, it will not 'happen to be duplicated'. And then technology and lifestyle will evolve beyond our current age and, the farther time goes and more alien reality becomes compared to now, the less likely accidental duplication becomes until becoming practically impossible (tho not accounting for the evolution of ai). And yes I DO think the author should be able to say 'its finished and no one else may touch it' and, if they have, it is disrespectful to do otherwise.
It's hard to tell where one ends and other's begin isn't it? If a choice is determined by the settings of Neuron 1 and Neuron 1 settings are determined by sensory data from Eye 2 and Eye 2 sensory data is from Object 3 and Object 3 is the way it is because of Person 4...
aka if everything one does is a result of the current state of a vast web of all interrelated events spanning the history of and everything within the universe itself, how can anything ever be caused by someone? How can AnyOne ever create anything? And at least nothing can ever be anyone's fault. Every thing is a combination of everything that results in it being itself.
So maybe, like you say, something separate from this and coming from nothing is problematic. But I think you give humans too much credit. I do not have to transcribe dreams to have my art not a layer built on human creation. Just now my puppy Sun is very wet yet wants to snuggle under the blankets with me and I am having to gently teach them that being wet means they need to dry off first. That data is not from a human source. I transcribe the symbolism of my experience in to this medium of Words that we both share an understanding of, but, beneath the surface, it is not a human creation I am building on.
I believe that humans taking from each other and building on each other leads to some of the greatest and worst things humans have done; but it is not the only way forward.
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When getting beyond simple selfpublishing I may be naive because I personally am not drawn by money. Publishing houses as the controllers of the works of individuals and the need to maximize profit for their growth and continued existence is an unknown to me. I have not yet delved in to it nor decided it is the optimal structure; so it is hard for me to speak on. I believe you are correct in pinpointing that my focus is on the purity and sanctimonious treatment of the work instead of profit and market plays. Is the system set up ideally in it's current form? How would you change it?
I would give the person in your bonus material positive feedback and feel that healthiest for their path rather than devalue their creation by comparison.
I think you have a great point on My Little Pony with misrepresentation actually being more acceptable to copyright than exact retelling without the permission of Hasbro. For your curiosity, I have a little free ai art gen somewhere, moderate a forum there, and run a community event there, so it is healthy for me to be aware of what the ai Involved can do. One of my forays involved creating AI Celestia and AI Luna as representations of themselves that can answer questions. So, while different from a fanfic, it is just as hypocritical as you felt and indeed a cause for amusement.
I think you have a good point on media licensing often being a negative and that you are right there is something bad there. Though I also feel the desires of the creator should be respected and that the problem is most likely in the profitdriven incentives of the corporations that gain control of the works of art (and an appreciation for monopolization rather than their wouldbe fans).
I think the da vinci stuff is a different discussion entirely as it has to do with comments about art and not someone publishing someone else's work for profit without consent while doing whatever they see fit to it. And generally that bullet seems slightly different from what I typed as my topic was theft of an artwork; not interpretation variation of viewers.
I like the 50 shades of grey example and approve of her changing it to be it's own thing rather than either lose the effort put in to the fanfic or try to state it as twilight cannon without consent. Everything stated in that example feels good to me without triggering my immorality sensors.
Sale of rights is nothing I have comments on at this current time.
The babel program is an exotic 'independently coming to something'.
I personally don't write fan fiction at all and it is easy to distinguish my written fiction from things ai's generate (at least with what ai is at this current time).
I believe the key topic you hit is 'independently coming to things' and that that should be encouraged and is moral while using expired copyright law to take someone else's work without their consent is immoral. I do not profess to yet have an ideal system for this in mind; I would focus here though as it has potential to replace the immoral parts of the system with moral parts. So yes independently coming to something actually should receive positive feedback in comparison to purposely copying something the creator does not want copied.
Nice question.
I believe if they do anything beyond creating something privately, they should respect the wishes of the creator of the realm.
Main thing I am thinking about is characters. In my own story world I am ok with others making thoughtful stories that don't mess with my characters and some world aspects. I basically dont want to make my own unique character i am attached to just for someone else to take over that character and change who they are without my consent. The worst example I've come across is in My Little Pony I once had an ai pony keep saying how princess luna was tragically dead; which was horrifying to me and I know was not in the bright happy my little pony series. I researched a bit and found it was from a fanfic that had gained prominence and was influencing the ai. My Little Pony is not a tragic nor depressing show and that totally clashed with it. When I share a story I like of characters I like, I don't want a depressed person to, thru fanfic, make history remember that character as like a drug addict or something horrific that I never said and essentially overwrite my own creation how they want and I don't.
So for fanfic I think authors should be open to agreeing with the fics of fans and fics can achieve canonicalness or at least recognition that way, but with a hard line preventing nonaccepted fanfics from actual publicity including inclusion in ai training data. Fanfics should be nowhere they are competing with the creation of the author or misleading fans in to thinking they are cannon. Yes i have no idea how to spell canon and not looking it up lol. Ultimately it should be up to the creator of the realm what they would like fans to do with it and fans should respect that.
just my opinion and perspective. what do you think?
cute :)
And yes. Yes I do. I often independently come to conclusions other logical people may also come to. I wouldn't know whether they have tho because I forge my own path.
Steal away then! You've clearly convinced yourself it is the only way to create things.
Glad you can't see any of my things :)
your art may be taken from others. mine is mostly based on dreams.
Let's say I write a book.
If I don't want people copying it, people shouldn't be copying it. I don't care if it's been 500 years. It's my book.
This is a weird thread. Lots of people for artists losing control of their creations quickly while simultaneously against artist creations being used by others without consent. Just my perspective but why should artists lose control of their own creations at all? The problem in copyright is tech companies doing patent thickets; not artists.
Even artistic creations held by corporations. Waiting for Marvel stuff to hit public domain to publish a bunch of Marvel novels since they can't protect their creations any more? Why is that acceptable? If someone creates something and doesn't want it stolen, I don't give a fuck what the law says, stealing it is theft. The thief should instead be using Marvel stuff as inspiration as they make their own universe; not just waiting an amount of time before stealing someone else's creation without consent. It isn't holding progress back at all to make novel artistic creations instead of steal others. Art = very different from tech.
when I publish a book, to steal it is consenting to be Luigi'd; no matter how long ago it came out.
the beginning of Trump's second term, before The Camps, and The Disappearances, when there were still LGBTQ bars.
Interesting. so he's telling Taiwan and Japan to start getting their own militaries strong enough that they can stand on their own. I have no automatic hostility toward the general concept were it done healthily (making sure both Taiwan and Japan transition to good military without issue). It's a matter of self sufficiency and that, at some point, each place should be baseline strong enough on all crucial facets of it's empire to stand on it's own. Better to be able to and choose not to than to not be able to. Having puppies just weaned right now, I don't disagree with the behavior. Weaning Taiwan and Japan off American military will help both longterm and also get american tendrils out of foreign stuff. Just my take. Feel free to downvote to negative infinity since I'm agreeing with a trump decision. Taiwan just has to hope Trump doesn't give them to China, which he may be doing. he appease all the bigwigs they let him stay king forever? That tha plan? he going to give ukrain to russia, taiwan to china, then pres for life backed by china russia?
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.