The Chinese scientist who allegedly created CRISPR babies is being detained(techcrunch.com)
techcrunch.com
The Chinese scientist who allegedly created CRISPR babies is being detained
https://techcrunch.com/2018/12/29/chinese-scientist-who-allegedly-created-the-first-genetically-engineered-babies-is-being-detained/
156 comments
Re read the article. It's not about the use of CRISPR but the lack of transparency in his operation. The couple gave a consent based on false info. They thought their babies would receive a type of 'vaccination'.
This is what I thought the big issue was, that the parents were grossly misinformed and uniformed about what Dr. He was doing.
Is there any good link with sources of what the patients were actually told?
The original articles about this were pretty vague and only had the initial negative response from scientists who were against the whole thing. But I’m curious about the level of consent he got and what the AIDS organization was told when they helped him find his guinea pigs.
If he really did say it was just a vaccination then regardless of what scientists think, he crossed a line no medical professional should take.
The original articles about this were pretty vague and only had the initial negative response from scientists who were against the whole thing. But I’m curious about the level of consent he got and what the AIDS organization was told when they helped him find his guinea pigs.
If he really did say it was just a vaccination then regardless of what scientists think, he crossed a line no medical professional should take.
He Jiankui did a Q&A in November, many of the questions people asked concerned the informed content process he used. The Q&A starts ~20 minutes in: https://www.youtube.com/watch?v=tLZufCrjrN0
I typed a transcript http://diyhpl.us/wiki/transcripts/human-genome-editing-summi...
> "rouge"
You mean rogue?
You mean rogue?
It's a play on "red"; the Dr is Chinese.
(For grammar-challenged people who might take dry humour as serious: above comment is clearly a joke. “Rouge” is the French word for “red”, but it’s a common misspelling for the English word “rogue”. It’s pretty clear the top post in thread is a misspelling, not a pun.)
Eh? I wasn't joking, and I've never seen "rogue" mis-spelled as "rouge".
The top post even put it in double quotes, e.g. "rouge". That makes it pretty clear it's a pun, in this case playing on rogue and red - and it works all the better because of the recent 'red danger', anti-Chinese sentiment that the powers that be are currently stirring up.
The top post even put it in double quotes, e.g. "rouge". That makes it pretty clear it's a pun, in this case playing on rogue and red - and it works all the better because of the recent 'red danger', anti-Chinese sentiment that the powers that be are currently stirring up.
If you’ve never seen rouge as misspelling of rogue, you haven’t read enough intertubes. Beyond that, I guess we won’t know until drmix intervenes - although now he’d say “of course!” it was voluntary ;)
[deleted]
If I was China I would put him in an underground lab and make him work day and night
I can't find the article but there was a geneticist who said the difference between Einstein and the average human was 50-200 base pairs.
Which ever country figures that out first will rule the world. Instead of getting an Einstein or Newton or Da Vinci every several hundred years, they could have an assembly line of them.
China already collected the DNA of 2,200 geniuses to try and find correlations. The West's value of "human rights" and subjective ethics will be our doom. We are completely ignoring avenues of research because people don't like the implications of intelligence being genetic
https://singularityhub.com/2013/03/19/chinas-bgi-to-sequence...
I can't find the article but there was a geneticist who said the difference between Einstein and the average human was 50-200 base pairs.
Which ever country figures that out first will rule the world. Instead of getting an Einstein or Newton or Da Vinci every several hundred years, they could have an assembly line of them.
China already collected the DNA of 2,200 geniuses to try and find correlations. The West's value of "human rights" and subjective ethics will be our doom. We are completely ignoring avenues of research because people don't like the implications of intelligence being genetic
https://singularityhub.com/2013/03/19/chinas-bgi-to-sequence...
I'm pretty sure it's about the ethics of altering humans and a fear or a resurgence of eugenics.
That aside, I'm also pretty sure someone reviewed his work and found out that his HIV-immune mutation was not done correctly, it's a bit late for me to find a link, will update later if you're interested.
Edit: Nvm, someone else posted a better answer: https://news.ycombinator.com/item?id=18798764
That aside, I'm also pretty sure someone reviewed his work and found out that his HIV-immune mutation was not done correctly, it's a bit late for me to find a link, will update later if you're interested.
Edit: Nvm, someone else posted a better answer: https://news.ycombinator.com/item?id=18798764
Will an army of Einsteins be impervious to atomic warfare? I mean if they have a superior grasp of physics and build the tech to intercept an ICBM then I suppose...
Who needs nukes when you can send an autonomous drone swarm to subjugate a country? Or develop an ethnic bio weapon to wipe out your enemies with no damage to infrastructure? Nukes will be seen as primitive brute force weapons in the future
You got your cause and effect backwards. The rules were only added after he did it, because he did it.
No. They were announcing crackdowns and punishments well before He Jiankui announced anything. This article, for example, is from several weeks before, and records punishments initiated well before that: https://www.nature.com/articles/d41586-018-07222-2
there isn't anything crispr specific, those are all about illegal data sharing of genetic information.
Why do you think that makes any difference?
Because sharing like that is done routinely, is generally accepted, and has not created a massive uproar like the CRISPR scandal did. I'm not making a moral judgement, just pointing out that this citation doesn't support the above-posted arguments since it's in a different-enough domain.
If you had posted official CRISPR rules (like the Asilomar Conference Guidelines) created by the community with some authority, that would have been better. To my knowledge, the CRISPR community didn't publish such things, just agreed, informally, to some unofficial guidelines. So it's not super-suprising to me that somebody skirted those unofficial guidelines.
If you had posted official CRISPR rules (like the Asilomar Conference Guidelines) created by the community with some authority, that would have been better. To my knowledge, the CRISPR community didn't publish such things, just agreed, informally, to some unofficial guidelines. So it's not super-suprising to me that somebody skirted those unofficial guidelines.
> Because sharing like that is done routinely, is generally accepted, and has not created a massive uproar
It obviously is not accepted (that's the whole point of that link!), and genetic and health information sharing routinely creates controversies, ranging from insufficient diversity to worries about AI (see DeepMind & NHS). So your premises are just wrong.
It obviously is not accepted (that's the whole point of that link!), and genetic and health information sharing routinely creates controversies, ranging from insufficient diversity to worries about AI (see DeepMind & NHS). So your premises are just wrong.
the rules were they before he did it, but not enforced (as usual). he triggered it.
Pardon my ignorance but why is it unethical to use CRISPR on human embryos? Is it a question of the technology being still too immature or the more philosophical question of whether it should be used at all? Something else?
In principle I think that we should consider doing germline edits in humans. In general, if we have the ability to improve ourselves, we should absolutely do it.
However, in this specific instance, I think being strict on the scientist is okay.
The scientist made a mutation that was supposed to make the babies immune to HIV. But it turns out that the alleged CCR5 mutation that he induced a) didn't make the babies immune to all HIV strains only most of them (there are CXCR4 based HIV strains) [1], and b) made them more susceptible to other diseases like west nile virus infection [2].
He didn't just do that, he also circumented the approval infrastructure of science that is supposed to watch out for unethical experiments. If such behaviour is rewarded, people will start to do ethically questionable experiments. Biology is still in the shadow of past ethical violations like e.g. the HeLa cell samples that were being used throughout science without consent from the donor. Or think of the contergan scandal where the manufacturer company advertised that pregnant women should take contergan. Later it turned out that it had an absolutely harmful effect on fetuses, crippling them for life. The worst thing about this: the company knew about the effects but chose to hide the facts from the public.
I don't say that we shouldn't do germline edits at all. We should just be really careful at what we are doing, especially at the start. After all we are forcing (we don't ask the baby) a human being to live with that genetic change for an entire lifetime and their offspring.
Instead, we could maybe have started with one of those really ugly hereditary diseases that end in certain early death due to an unpopular mutation of a certain gene... Changing that gene to the popular variant would be objectively helpful and meaningful.
[1]: https://www.nature.com/articles/d41586-018-07545-0 [2]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2118086/
However, in this specific instance, I think being strict on the scientist is okay.
The scientist made a mutation that was supposed to make the babies immune to HIV. But it turns out that the alleged CCR5 mutation that he induced a) didn't make the babies immune to all HIV strains only most of them (there are CXCR4 based HIV strains) [1], and b) made them more susceptible to other diseases like west nile virus infection [2].
He didn't just do that, he also circumented the approval infrastructure of science that is supposed to watch out for unethical experiments. If such behaviour is rewarded, people will start to do ethically questionable experiments. Biology is still in the shadow of past ethical violations like e.g. the HeLa cell samples that were being used throughout science without consent from the donor. Or think of the contergan scandal where the manufacturer company advertised that pregnant women should take contergan. Later it turned out that it had an absolutely harmful effect on fetuses, crippling them for life. The worst thing about this: the company knew about the effects but chose to hide the facts from the public.
I don't say that we shouldn't do germline edits at all. We should just be really careful at what we are doing, especially at the start. After all we are forcing (we don't ask the baby) a human being to live with that genetic change for an entire lifetime and their offspring.
Instead, we could maybe have started with one of those really ugly hereditary diseases that end in certain early death due to an unpopular mutation of a certain gene... Changing that gene to the popular variant would be objectively helpful and meaningful.
[1]: https://www.nature.com/articles/d41586-018-07545-0 [2]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2118086/
We are possibly many decades away to "execute" entire human genome and verify that edited code does not introduce other bugs. A bad mutation can spread in to population and cause damages that are too expensive to contemplate. The reason evolution has been slow is very likely because genome is so complex and it takes time to test out mutations. One can probably accelerate this process by throwing in simulation utilizing immense computing power. But until that happens we probably don't want to edit ourselves.
> In principle I think that we should consider doing germline edits in humans. In general, if we have the ability to improve ourselves, we should absolutely do it.
What if not everyone has the ability to improve themselves, say due to cost?
What if not everyone has the ability to improve themselves, say due to cost?
Cost would not be my biggest concern.
Genes are not like points you can spend in a game to upgrade stuff. Editing them is a two edged sword.
Cystic Fibrosis is likely so much more common in Caucasians because having one copy of the gene protects against at least a couple of diseases that were seen a lot in Europe for a time. So being a carrier was protective and made you more likely to survive, similar to how Sickle Cell is protective against malaria.
"Survival of the fittest" doesn't mean the strongest, smartest, etc. Evolution is more about winnowing than about adapting per se. The ones that don't die in the face of unexpected new challenges are the "winners," even if it means they have a defect protecting them from something worse than what the defect does to them.
A fish out of water dies. But gills have a lot of advantages in the water.
Genes just do not work the way comments like this one (above) seem to assume. They just don't.
Genes are not like points you can spend in a game to upgrade stuff. Editing them is a two edged sword.
Cystic Fibrosis is likely so much more common in Caucasians because having one copy of the gene protects against at least a couple of diseases that were seen a lot in Europe for a time. So being a carrier was protective and made you more likely to survive, similar to how Sickle Cell is protective against malaria.
"Survival of the fittest" doesn't mean the strongest, smartest, etc. Evolution is more about winnowing than about adapting per se. The ones that don't die in the face of unexpected new challenges are the "winners," even if it means they have a defect protecting them from something worse than what the defect does to them.
A fish out of water dies. But gills have a lot of advantages in the water.
Genes just do not work the way comments like this one (above) seem to assume. They just don't.
Genes are not like points you can spend in a game to
upgrade stuff. Editing them is a two edged sword.
hell, not even any antibiotics in the first place
No man-made antibiotics. I assure you, Mother Nature was way ahead of humankind there and, in fact, a lot of our drugs are based on things already found in nature.
We have a want center. We tend to like the taste of things that benefit us. There is research on such things.
If you are sick and you respect your cravings, it's possible to find yourself consuming a thing that contains a natural form of medication that addresses your issue, and doing so in sufficiently high quantities as to hit a medicinal dosage of it.
This is likely a root cause of the idea that "god" made someone better: We don't know what they were sick with or what cured it, so it seems miraculous. That doesn't mean there wasn't something in specific that they did or that simply happened that fixed the issue.
We are swarming with billions of microbes at all times. Some are beneficial and we can't digest our food without them. Some are harmful. Low levels of harmful microbes are a routine norm that the body deals with daily. It's only when it gets beyond a certain threshold that it becomes identifiable sickness.
I would be surprised if we were unable to find some wins that are, relative to our current objectives, major, obvious, safe, and free.
When antibiotics first came out, the world announced the end of disease. It's a few decades later and we are dealing with the rise of super bugs instead of living in the predicted disease-free utopia.
You and I fundamentally don't see this problem space at all similarly.
No man-made antibiotics. I assure you, Mother Nature was way ahead of humankind there and, in fact, a lot of our drugs are based on things already found in nature.
We have a want center. We tend to like the taste of things that benefit us. There is research on such things.
If you are sick and you respect your cravings, it's possible to find yourself consuming a thing that contains a natural form of medication that addresses your issue, and doing so in sufficiently high quantities as to hit a medicinal dosage of it.
This is likely a root cause of the idea that "god" made someone better: We don't know what they were sick with or what cured it, so it seems miraculous. That doesn't mean there wasn't something in specific that they did or that simply happened that fixed the issue.
We are swarming with billions of microbes at all times. Some are beneficial and we can't digest our food without them. Some are harmful. Low levels of harmful microbes are a routine norm that the body deals with daily. It's only when it gets beyond a certain threshold that it becomes identifiable sickness.
I would be surprised if we were unable to find some wins that are, relative to our current objectives, major, obvious, safe, and free.
When antibiotics first came out, the world announced the end of disease. It's a few decades later and we are dealing with the rise of super bugs instead of living in the predicted disease-free utopia.
You and I fundamentally don't see this problem space at all similarly.
There's a huge difference between "you can give yourself an extra two percent by gnawing on a tree" and "if you follow orders we can wipe out almost every single-celled organism in your entire body within twenty-four hours".
We eradicated smallpox. Tangled bedsheets kill more people than polio. Norman Borlaug saved a billion lives. Malaria will die with Anopheles gambiae.
People once knew that flight was impossible. Not just hard, but impossible, prevented by the laws of physics and not meant for mankind. I flew home from my holiday vacation yesterday. It cost me as much as a good pair of shoes. Less than two days' pay at minimum wage.
"We can never know enough to be safe" is simply and obviously false. Crab-bucket thinking at its finest. We can improve the human condition. We can know enough. Even better, we're getting to the point where we know enough to also recognize that we do or don't know enough.
If you really believe that single bad actors will inevitably ruin everything good and we cannot ever make anything better, well, good luck to you. I submit that, with that point of view, you're better off quitting now so you don't have to experience the doomed future you propose.
It's a few decades later and we are dealing with
the rise of super bugs instead of living in the
predicted disease-free utopia.
We eradicated smallpox. Tangled bedsheets kill more people than polio. Norman Borlaug saved a billion lives. Malaria will die with Anopheles gambiae.
People once knew that flight was impossible. Not just hard, but impossible, prevented by the laws of physics and not meant for mankind. I flew home from my holiday vacation yesterday. It cost me as much as a good pair of shoes. Less than two days' pay at minimum wage.
"We can never know enough to be safe" is simply and obviously false. Crab-bucket thinking at its finest. We can improve the human condition. We can know enough. Even better, we're getting to the point where we know enough to also recognize that we do or don't know enough.
If you really believe that single bad actors will inevitably ruin everything good and we cannot ever make anything better, well, good luck to you. I submit that, with that point of view, you're better off quitting now so you don't have to experience the doomed future you propose.
We can never know enough to be safe" is simply and obviously false. Crab-bucket thinking at its finest.
Way to go to wildly twist my words out of shape.
I submit that, with that point of view, you're better off quitting now so you don't have to experience the doomed future you propose.
I'm quite open about my struggles with being suicidal. But let's give the benefit of the doubt and assume you don't actually know that.
As kindly as possible, actively encouraging an internet stranger to off themselves because you don't agree with what you imagine they said has got to be one of the absolute ugliest tactics I've ever seen in an internet argument.
So I'm done here. That's not something I consider to be remotely within the realm of a good faith argument.
Note to self: Suggest to my would-be co-founder that such a thing should be a bannable offense on his forum. Cuz: Ew!
Way to go to wildly twist my words out of shape.
I submit that, with that point of view, you're better off quitting now so you don't have to experience the doomed future you propose.
I'm quite open about my struggles with being suicidal. But let's give the benefit of the doubt and assume you don't actually know that.
As kindly as possible, actively encouraging an internet stranger to off themselves because you don't agree with what you imagine they said has got to be one of the absolute ugliest tactics I've ever seen in an internet argument.
So I'm done here. That's not something I consider to be remotely within the realm of a good faith argument.
Note to self: Suggest to my would-be co-founder that such a thing should be a bannable offense on his forum. Cuz: Ew!
Now I'm curious. What did you intend to write? Your post gives equal credence to herbal pseudoscience and modern medicine and, in context, questions whether antibiotics were worth it.
Yes, I should probably find a way to condemn luddite fatalism and anti-intellectualism without pointing out that they are species-wide suicide, exactly as irrational as the personal version and exactly as unacceptable to push for. Maybe I should have simply downvoted you, flagged your post, and hoped nobody saw it. I'll even apologize; I am sorry.
That said, honestly, "disagree" is entirely too weak a word for my perspective on the beliefs your comment helps people believe. I'm going to contest moloch-worship and naturopathy and luddism even when they're unintentional. When they show up on Facebook and Reddit they end with twentysomething mommies deciding not to vaccinate their babies and assaulting Waymo safety personnel. And, well, my real audience are those potential antivaxxers and bucketed crabs, so logos is actively counterproductive and I'm stuck with ethos and pathos, neither of which are anything like good faith. :/
Yes, I should probably find a way to condemn luddite fatalism and anti-intellectualism without pointing out that they are species-wide suicide, exactly as irrational as the personal version and exactly as unacceptable to push for. Maybe I should have simply downvoted you, flagged your post, and hoped nobody saw it. I'll even apologize; I am sorry.
That said, honestly, "disagree" is entirely too weak a word for my perspective on the beliefs your comment helps people believe. I'm going to contest moloch-worship and naturopathy and luddism even when they're unintentional. When they show up on Facebook and Reddit they end with twentysomething mommies deciding not to vaccinate their babies and assaulting Waymo safety personnel. And, well, my real audience are those potential antivaxxers and bucketed crabs, so logos is actively counterproductive and I'm stuck with ethos and pathos, neither of which are anything like good faith. :/
I was diagnosed in my mid thirties with atypical cystic fibrosis. By the time I was diagnosed, I was at death's door. My specialist informed me that people like me don't get well, that symptom management is the name of the game. I informed him that it might be true that I would spend the rest of my life fighting off the next infection, but this one had to go as it was killing me. He physically took a step back as if I had slapped him. He also began scheduling me fewer appointments as I got healthier while expressing zero curiosity as to how I was accomplishing that.
I've spent time around antivaxxers. Many of them have legitimate reasons for pursuing alternative medicine. Those reasons are rooted in being failed by conventional medicine. Some of those folks gave me useful information after doctors dismissively wrote me off for dead.
There's a lot of information out there on the importance of gut microbes and even how body chemistry fosters biofilm which promotes antibiotic resistance. Antibiotic resistance is potentially reversible.
I had an infection that the doctors never ID'd that was not responding to antibiotics. I went through multiple rounds of antibiotics, some of which had side effects like "kills some percentage of people." I saw zero improvement.
I came up with my own hypothesis as to what was going on, ran it past a friend who happened to be a doctor and he said it wasn't crazy talk. Within two weeks, my condition stabilized and I began gradually improving after talking doctors into giving me certain antibiotics and pursuing specific therapies.
Antibiotic resistance tends to be fostered in developing countries that lack adequate water and sewer infrastructure. There is also research out there on failure to thrive and stunting that I've looked at. Stunting has a component of "probably infection related." Some kids don't respond to simply giving them more food. You also need to add probiotics and address the hygiene issues.
The gut is home to about 70 to 80 percent of the immune cells in our body. So digestion, nutrition, diet, fasting, etc all can have significant impact on immune health and how the body handles infection.
It's possible to use spices, like cinnamon and oregano, to help fight infection.
There's a lot more to it and it's a complicated topic. Also, lots of folks believe I'm insane and telling tall tales, because a former homemaker can't possibly understand anything about health that doctors and scientists can't figure out, no.
So, have a nice day. This is probably a pointless discussion for various reasons.
I've spent time around antivaxxers. Many of them have legitimate reasons for pursuing alternative medicine. Those reasons are rooted in being failed by conventional medicine. Some of those folks gave me useful information after doctors dismissively wrote me off for dead.
There's a lot of information out there on the importance of gut microbes and even how body chemistry fosters biofilm which promotes antibiotic resistance. Antibiotic resistance is potentially reversible.
I had an infection that the doctors never ID'd that was not responding to antibiotics. I went through multiple rounds of antibiotics, some of which had side effects like "kills some percentage of people." I saw zero improvement.
I came up with my own hypothesis as to what was going on, ran it past a friend who happened to be a doctor and he said it wasn't crazy talk. Within two weeks, my condition stabilized and I began gradually improving after talking doctors into giving me certain antibiotics and pursuing specific therapies.
Antibiotic resistance tends to be fostered in developing countries that lack adequate water and sewer infrastructure. There is also research out there on failure to thrive and stunting that I've looked at. Stunting has a component of "probably infection related." Some kids don't respond to simply giving them more food. You also need to add probiotics and address the hygiene issues.
The gut is home to about 70 to 80 percent of the immune cells in our body. So digestion, nutrition, diet, fasting, etc all can have significant impact on immune health and how the body handles infection.
It's possible to use spices, like cinnamon and oregano, to help fight infection.
There's a lot more to it and it's a complicated topic. Also, lots of folks believe I'm insane and telling tall tales, because a former homemaker can't possibly understand anything about health that doctors and scientists can't figure out, no.
So, have a nice day. This is probably a pointless discussion for various reasons.
talking doctors into giving me certain antibiotics
a former homemaker can't possibly understand anything
about health that doctors and scientists can't figure
out, no.
Publish a case study. Please. I beg you.
The people that went into the "people don't get better from this" statistic did not just all lay down and die. I guarantee you they went home and searched for a cure the same way you did. But they aren't here and you are.
Normally I'd say you were lucky, but you claim a testable hypothesis that made sense to an MD and then worked. And you seem rational enough that I don't think you'd be giving "specific therapies" so much credit if they hadn't made the difference.
And you know what we call alternative medicine with testable hypotheses that made sense to an MD and were then proven to work? "Medicine". We went back to leeches and maggots and poop transplants because someone proved that they work. But someone had to prove it. Someone had to brainstorm the principled explanation, someone had to write it down, someone had to add it to the standard, indexed, well-known and searchable body of knowledge. Because there are not enough doctors in the world for them to spend hundreds of hours researching each edge case when they're already massively overworked by the hour per kid it takes to stave off MMR and tetanus and pertussis. It needs to be indexed and searchable, it needs to be in the knowledge base, it needs to be standard.
Getting better from things that "people don't get better from" is by definition novel. Solving something that's common enough to have statistics is similarly valuable. A doctor friend's name will get you past the bigots and a publication will be worth his time. You claim a hypothesis, a principled explanation, and a measure of peer review, so you're good on the fundamentals. If you lead with a technical root-cause analysis and reveal your "specific therapies" with a dramatic flourish you'll even turn the "tall tales" into bonus points for creativity and some word-of-mouth publicity. Your case is entirely publishable.
So prove me wrong. Please. "That which can be destroyed by the truth should be destroyed by the truth." Publish it. Save the lives of all the future people that'll get something that "people don't get better from". If you're right about cinnamon and oregano, contribute some good hard evidence and help bring general beliefs into better alignment with reality, which'll save more lives than just the people that share your exact epidemiology. Strike that "alternative" off the medicine that healed you. I'd damn sure like to live forever and any claim that reproduces can help me do that. Bring everyone up to your level instead of sneering down your nose while handing the antivaxxers ammunition.
I've been doing this about 18 years. I'm no longer friends with said MD.
The piece he said made sense:
I figured my husband brought a parasitic infection back from Saudi, a class of trypanosoma, and was reinfecting me every time we has sex and this was why it didn't matter how many antibiotics I took. I was constantly being reinfected.
So I told my husband "you are never touching me again without a condom" and I stabilized in two weeks.
Then I began asking for standard CF antibiotics that are fairly strong but don't have side effects like "kills some percentage of people."
I managed to get on zithromax maintenance therapy, a standard treatment for CF. It has a long half life. So I was on it like two weeks out of the month or something and it's good for like another ten days after the final dose. So I essentially had antibiotics in my system all the time, all but maybe four days a month.
Then a med student at the teaching hospital that I had good rapport with put me on Levaquin, another fairly strong but doesn't routinely kill people drug that is commonly prescribed for CF. After that, I mostly went back to needing antibiotics during stress times, like midterms, finals, Christmas. That was my normal for much of my life.
CF doesn't actually make you sick per se. It causes a bottle neck in the processing of certain molecules due to a defective cell channel. Lots of secondary and tertiary and fourth order consequences grow out of that.
I got extremely interested in what do we know about what happens at the cellular level. I talked to a guy with a PhD in Chemistry. I talked to a guy with a PhD in Biology. I asked a lot of questions of a former RN and she told me "You are asking things they don't have answers for. They don't actually know what that drug does at the cellular level."
It's been a long journey and I'm still struggling to survive financially. I've had multiple blogs where I've tried to find the words to express some of it, but I have no audience, I can get no traction. That means I get no feedback for what makes sense to people and what doesn't.
I'm not sneering down my nose at anyone. I've been thrown off of multiple forums. I've been subjected to really ugly personal attacks. Mods on most forums will not protect me. They tell me I'm the problem and the people attacking me are fine and I need to STFU.
So, you know, right after I win the lottery or marry a millionaire I'll get on some attempt to publish something for some internet stranger who initially told me to go kill myself. Sure. Cuz I owe you so fucking much.
Meanwhile, I'm still struggling to make ends meet and try to eat everyday. And that's where my focus needs to remain for the time being because most of the world quite seriously wishes I would drop dead in earnest and has been actively trying to help make sure I die instead of merely being a flippant and lousy argument tactic.
The piece he said made sense:
I figured my husband brought a parasitic infection back from Saudi, a class of trypanosoma, and was reinfecting me every time we has sex and this was why it didn't matter how many antibiotics I took. I was constantly being reinfected.
So I told my husband "you are never touching me again without a condom" and I stabilized in two weeks.
Then I began asking for standard CF antibiotics that are fairly strong but don't have side effects like "kills some percentage of people."
I managed to get on zithromax maintenance therapy, a standard treatment for CF. It has a long half life. So I was on it like two weeks out of the month or something and it's good for like another ten days after the final dose. So I essentially had antibiotics in my system all the time, all but maybe four days a month.
Then a med student at the teaching hospital that I had good rapport with put me on Levaquin, another fairly strong but doesn't routinely kill people drug that is commonly prescribed for CF. After that, I mostly went back to needing antibiotics during stress times, like midterms, finals, Christmas. That was my normal for much of my life.
CF doesn't actually make you sick per se. It causes a bottle neck in the processing of certain molecules due to a defective cell channel. Lots of secondary and tertiary and fourth order consequences grow out of that.
I got extremely interested in what do we know about what happens at the cellular level. I talked to a guy with a PhD in Chemistry. I talked to a guy with a PhD in Biology. I asked a lot of questions of a former RN and she told me "You are asking things they don't have answers for. They don't actually know what that drug does at the cellular level."
It's been a long journey and I'm still struggling to survive financially. I've had multiple blogs where I've tried to find the words to express some of it, but I have no audience, I can get no traction. That means I get no feedback for what makes sense to people and what doesn't.
I'm not sneering down my nose at anyone. I've been thrown off of multiple forums. I've been subjected to really ugly personal attacks. Mods on most forums will not protect me. They tell me I'm the problem and the people attacking me are fine and I need to STFU.
So, you know, right after I win the lottery or marry a millionaire I'll get on some attempt to publish something for some internet stranger who initially told me to go kill myself. Sure. Cuz I owe you so fucking much.
Meanwhile, I'm still struggling to make ends meet and try to eat everyday. And that's where my focus needs to remain for the time being because most of the world quite seriously wishes I would drop dead in earnest and has been actively trying to help make sure I die instead of merely being a flippant and lousy argument tactic.
The objective function currently in effect has kept us going through an extremely wide variety of environmental and cultural conditions.
Will the new one? Suppose the current civilization doesn’t last forever?
We have a responsibility to people a thousand years from now, not just the people of tomorrow.
Will the new one? Suppose the current civilization doesn’t last forever?
We have a responsibility to people a thousand years from now, not just the people of tomorrow.
> Cost would not be my biggest concern.
i believe the comment refers to the way genes get inherited to the next generation. If making gene editing is expensive, the poor will have yet another disadvantage that their children will be less 'capable' than their rich counterparts.
If gene editing is possible - it should also be subsidized so that all of society benefits, not just select few who can afford it.
i believe the comment refers to the way genes get inherited to the next generation. If making gene editing is expensive, the poor will have yet another disadvantage that their children will be less 'capable' than their rich counterparts.
If gene editing is possible - it should also be subsidized so that all of society benefits, not just select few who can afford it.
For now, the rich are more than welcome to keep their idiot choices to fuck with a thing we don't fully understand.
I have a form of Cystic Fibrosis. That's enough horror without it being a thing my idiot parents did to me on purpose in hopes of raiding my IQ.
There is some evidence that some genetic disorders impact brain function and tend to correlate to higher IQs, not lower ones. From what I gather, CF seems to be one of them.
I've made my peace with the hand I was dealt at birth and I'm pretty good at looking for the silver lining. I doubt I could so easily make my peace with it if I learned my parents thought that having a high IQ was more valuable than having functional lungs and a functional digestive tract.
I have a form of Cystic Fibrosis. That's enough horror without it being a thing my idiot parents did to me on purpose in hopes of raiding my IQ.
There is some evidence that some genetic disorders impact brain function and tend to correlate to higher IQs, not lower ones. From what I gather, CF seems to be one of them.
I've made my peace with the hand I was dealt at birth and I'm pretty good at looking for the silver lining. I doubt I could so easily make my peace with it if I learned my parents thought that having a high IQ was more valuable than having functional lungs and a functional digestive tract.
> and a functional digestive tract.
Different disease to yours but I hear that, I never realised how important that was until mine went sideways, it affects everything.
Different disease to yours but I hear that, I never realised how important that was until mine went sideways, it affects everything.
You appear to take an extreme stance.
Try a different argument: If your parents knew there was a high probability that their child would inherit genes making CF an aspect of their lives, would they try to change that even at potential risk.
As a parent myself there is very little I wouldn't do for my child.
I can't imagine the pain CF has caused you and the sacrifices you've had to make. If I were your parent, my desire to not put you through pain would be invariably high.
Isn't that one element of exploration in foundations looking for a cure?
It seems transparency, the longer term impacts, the tradeoffs we will face that we just don't know. There is a cold logic that accompanies that line of thinking. I am not saying one way or another, I just feel it is worth echoing from a purely logical standpoint.
Try a different argument: If your parents knew there was a high probability that their child would inherit genes making CF an aspect of their lives, would they try to change that even at potential risk.
As a parent myself there is very little I wouldn't do for my child.
I can't imagine the pain CF has caused you and the sacrifices you've had to make. If I were your parent, my desire to not put you through pain would be invariably high.
Isn't that one element of exploration in foundations looking for a cure?
It seems transparency, the longer term impacts, the tradeoffs we will face that we just don't know. There is a cold logic that accompanies that line of thinking. I am not saying one way or another, I just feel it is worth echoing from a purely logical standpoint.
No, I am not taking an extreme position.
Saying that trying to make designer babies comes with potential downside that is potentially horrifying is not an extreme position. It also isn't the same as arguing that people with known genetic defects should be denied the opportunity to try to have children who lack that defect.
Isn't that one element of exploration in foundations looking for a cure?
I've grown vastly healthier while the entire world calls me crazy and accuses me of making that up. I've done so largely via diet and lifestyle.
Based on that, my view is that the obsession with Oo, Shiny! tech solutions expected to create some slam-dunk solution actually hinders real progress. It causes the world to largely overlook more prosaic solutions with more immediate pay-off but less glamor.
Saying that trying to make designer babies comes with potential downside that is potentially horrifying is not an extreme position. It also isn't the same as arguing that people with known genetic defects should be denied the opportunity to try to have children who lack that defect.
Isn't that one element of exploration in foundations looking for a cure?
I've grown vastly healthier while the entire world calls me crazy and accuses me of making that up. I've done so largely via diet and lifestyle.
Based on that, my view is that the obsession with Oo, Shiny! tech solutions expected to create some slam-dunk solution actually hinders real progress. It causes the world to largely overlook more prosaic solutions with more immediate pay-off but less glamor.
The same can be said for generational wealth, education, culture, language, and even names.
That's an argument against all medical procedures. Costs will come down as technology improves. Some costs can be socialized, e.g. if you want to prevent babies from inheriting CF.
That's a social/political problem and needs a political solution. I rather find myself in a situation where we have the means to improve everyone's lives but don't do it yet than in a situation where we don't have such means at all because we didn't pursue them because we were so afraid that it might only benefit a sub-population.
There will certainly be countries on the world where the benefits of the technology will affect only a tiny elite population, but I think in many other countries it might benefit a much larger chunk. Any country with a public healthcare system should consider doing germline edits if they decrease the risk of very expensive chronic diseases.
There will certainly be countries on the world where the benefits of the technology will affect only a tiny elite population, but I think in many other countries it might benefit a much larger chunk. Any country with a public healthcare system should consider doing germline edits if they decrease the risk of very expensive chronic diseases.
If we can edit, and it's reliable, we (those that can afford it, not I) will. I don't think that's a conversation that we as a society can really have while delivering much impact.
A more salient set of questions to me, is how do we decide what constitutes improvements, and what responsibility do we have to improve those around us once it's economically feasible?
I recently had a discussion with someone who believed that inhibiting genes that correlate with aggression or certain levels of in-group bias should be mandatory for the general population once we as a society are able to do it safely and reliably.
In his eyes, sanding off our rougher edges in pursuit of a social ideal net improvement on humanity.
I personally was appalled by the idea.
A more salient set of questions to me, is how do we decide what constitutes improvements, and what responsibility do we have to improve those around us once it's economically feasible?
I recently had a discussion with someone who believed that inhibiting genes that correlate with aggression or certain levels of in-group bias should be mandatory for the general population once we as a society are able to do it safely and reliably.
In his eyes, sanding off our rougher edges in pursuit of a social ideal net improvement on humanity.
I personally was appalled by the idea.
I agree that once this is possible, and advantageous, it will happen. Flying out to Thailand or wherever is already cheap compared to any serious medical procedure. Would we arrest people if they come home pregnant? But before we see this for editing, we will see it for embryo selection... which has all the same questions in milder forms.
I'm similarly appalled by your friend's beliefs, although I imagine Beijing will not feel the same way.
Besides worries about individual illness, I worry that self-interested improvements may accidentally remove certain types of people it turns out we need. For example, what if a change protective against autism turned out to weed out the best scientists? For each individual this may be a great choice.
I'm similarly appalled by your friend's beliefs, although I imagine Beijing will not feel the same way.
Besides worries about individual illness, I worry that self-interested improvements may accidentally remove certain types of people it turns out we need. For example, what if a change protective against autism turned out to weed out the best scientists? For each individual this may be a great choice.
Doesn't this already manifest in the form of gyms, advanced medicine, proper exercise and nutrition, and various other "improve ourselves" things that require money?
It does, and it turns out that poor people suffering is morally acceptable to those with the means to ease it.
Yes it does, but genetics could take the wealth and power gap to a whole new level. Maybe vanilla humans will just be servants and pets to modified humans.
Having neighbours with significantly lower IQ is not something that anyone wants, so if the procedure works rich people would be most interested to apply it to everyone.
But until a working method is found and proven safe, no rich people will be going out of thier way to become test subjects. In fact it is more likely that poor people will be paid for testing improvements on their children.
But until a working method is found and proven safe, no rich people will be going out of thier way to become test subjects. In fact it is more likely that poor people will be paid for testing improvements on their children.
If nobody wants dumb neighbours, shouldn't public education be really superb?
This is an interesting argument, and it shows that although the public version won't be the absolute best, society will invest significant amount of resources into it.
Considering that unlike education it is one time investment, doesn't need to be applied to all people at once†, naturally propagates through intermarriage, i think it is safe to assume that split of humankind into two species: smart and rich, poor and normal is a very unlikely event.
† it is actually very important to have a large number of unmodified people for several generations for extra safety
Considering that unlike education it is one time investment, doesn't need to be applied to all people at once†, naturally propagates through intermarriage, i think it is safe to assume that split of humankind into two species: smart and rich, poor and normal is a very unlikely event.
† it is actually very important to have a large number of unmodified people for several generations for extra safety
You can't (yet) buy intelligence.
It’s going to be an amazing world briefly when poor people are super smart and resistant to measles when rich kids aren’t.
I don't understand how the technology works. Could you really in theory edit genes in living people? Or is this more gene editing of the sperm and then let nature do the propagation
So? Should we not have cars, planes, antibiotics, computers, etc. because some cannot afford them?
It's really all of the above. For a technology as monumental as human germline editing, the scientific consensus is that we are not yet ready to perform these experiments. There is a widely-supported moratorium on the type of research Dr. He has done, from the ethical implications of the work to the not yet fully understood risks of off-target edits when performing CRISPR modfifications.
And even so, what Dr. He did can only be described as bad science. He conducted a study with woefully misinformed participants, and it would appear that there are significant technical shortcomings in his procedure as well. For instance, Dr. He proceeded to implant modified embryos even after confirming that the attempted knockout of the CCR5 gene was unsuccessful.
In summary, Dr. He's research flew in wanton violation of worldwide standards for ethics and safe scientific practice, while failing to accomplish anything of note.
And even so, what Dr. He did can only be described as bad science. He conducted a study with woefully misinformed participants, and it would appear that there are significant technical shortcomings in his procedure as well. For instance, Dr. He proceeded to implant modified embryos even after confirming that the attempted knockout of the CCR5 gene was unsuccessful.
In summary, Dr. He's research flew in wanton violation of worldwide standards for ethics and safe scientific practice, while failing to accomplish anything of note.
I’m getting mixed information from these comments. You say he failed to accomplish anything of note. Others have said that his work did leave the subjects immune to some HIV. You say the participants were ill informed, other comments (and his own claims) state that there was a high degree of understanding and communication with reasonably intelligent backgrounds.
What’s going on here? This seems like a recurring phenomenon with unethical science - people shut it down wholesale while refusing to entertain the positives. I mean don’t get me wrong - this seems unethical on several levels, but if the work shows actual successful avoidance of HIV in the patients then that’s something we have tested and done that we hadn’t before.
If the subjects really have that immunity, then saying he’s “failed to accomplish anything of note” is a pretty unethical claim itself.
What’s going on here? This seems like a recurring phenomenon with unethical science - people shut it down wholesale while refusing to entertain the positives. I mean don’t get me wrong - this seems unethical on several levels, but if the work shows actual successful avoidance of HIV in the patients then that’s something we have tested and done that we hadn’t before.
If the subjects really have that immunity, then saying he’s “failed to accomplish anything of note” is a pretty unethical claim itself.
It's like editing a piece of code without fully understanding what it does, without unit tests, and your text editor may be buggy.
I like that analogy. An even better one: porting the code of `sed' to a new operating system without fully understanding it, using `sed' to automatically correct bugs in fundamental operating system code without checks, recompiling said OS, and hoping it works perfectly.
> It's like editing a piece of code without fully understanding what it does, without unit tests, and your text editor may be buggy.
No, it is far worse than what you described. your described buggy code can cause damages but you have the choice to delete them all to stop any further damages.
There is no such option for experiments done on humans.
No, it is far worse than what you described. your described buggy code can cause damages but you have the choice to delete them all to stop any further damages.
There is no such option for experiments done on humans.
> There is no such option for experiments done on humans.
There are, unfortunately, options for deleting humans with "buggy code", the real problems surround the fact that it is other - probably "buggy" - humans making the determination of which humans to mark for deletion.
There are, unfortunately, options for deleting humans with "buggy code", the real problems surround the fact that it is other - probably "buggy" - humans making the determination of which humans to mark for deletion.
And on top of that, the piece of code is fully spaghetti, poorly understood and documented, and contains tight coupling between components. You don't know what breaks and the implication, until it really breaks.
Not only that, compilation time takes 9 months and it could take several decades for a fatal bug to pop up in production.
As a scientist myself, you should always be very wary of things like this because scientists often think they have things totally figured out and then boom, oops, we knew nothing and the gene you altered or change you made has about 100 different effects that we hadn't thought of or known about. You make these sorts of mistakes in a human being and you've just given them problems for the entirety of their lifetime that they never asked for.
"First, do no harm" is harder to live up to than you think.
"First, do no harm" is harder to live up to than you think.
Best explanation of the issues I have seen is https://www.theatlantic.com/science/archive/2018/12/15-worry...
Lots of nuances. This Twitter thread by a prominent biologist provides a detailed response to your question, worth a read.
https://mobile.twitter.com/thattai/status/106795825891106406...
https://mobile.twitter.com/thattai/status/106795825891106406...
There are several issues:
* The technology is still new. We don't have a very strong grasp on the potential ways that CRISPR can go horribly, horribly wrong (as in delete-an-entire-chromosome-wrong) and having technology in place to watch for these failures.
* Biology in general suffers from the problem that a lot of our parts are co-opted to do several different things, so knocking out something that is making you sick could have a side effect of suddenly making your kidneys stop working or other serious effects.
* Germ-line edits are heritable. The potential consequences of things going wrong affect more than just the person in question, and the recourse for fixing them is unclear.
* Consent is tricky. The person who is affected is, by definition, not yet alive to offer consent. Given the potential consequences... it's something that is going to want a fairly involved discussion on how to properly seek consent.
The thing about this tale is that the researcher in question flubbed just about everything that could be flubbed. The participants were told by the researcher himself (BIG no-no) that this was an experimental HIV vaccine and apparently nothing at all about it being CRISPR. Furthermore, HIV transmission via paternal sperm donation is very easy to guard against with conventional methods; the gene knocked out may not have actually been sufficient to protect against the HIV strains the father had; and the actual results were pretty damn poor (one embryo was mosaic, another had only one chromosome affected). The general mood after He gave his presentation changed from "oh dear" to "hand me the pitchfork." A silver lining is that it does seem that the Chinese community has been clear in emphasizing that it is not condoning this sort of wildcat experimentation, which is one fear that many people have had in the past.
* The technology is still new. We don't have a very strong grasp on the potential ways that CRISPR can go horribly, horribly wrong (as in delete-an-entire-chromosome-wrong) and having technology in place to watch for these failures.
* Biology in general suffers from the problem that a lot of our parts are co-opted to do several different things, so knocking out something that is making you sick could have a side effect of suddenly making your kidneys stop working or other serious effects.
* Germ-line edits are heritable. The potential consequences of things going wrong affect more than just the person in question, and the recourse for fixing them is unclear.
* Consent is tricky. The person who is affected is, by definition, not yet alive to offer consent. Given the potential consequences... it's something that is going to want a fairly involved discussion on how to properly seek consent.
The thing about this tale is that the researcher in question flubbed just about everything that could be flubbed. The participants were told by the researcher himself (BIG no-no) that this was an experimental HIV vaccine and apparently nothing at all about it being CRISPR. Furthermore, HIV transmission via paternal sperm donation is very easy to guard against with conventional methods; the gene knocked out may not have actually been sufficient to protect against the HIV strains the father had; and the actual results were pretty damn poor (one embryo was mosaic, another had only one chromosome affected). The general mood after He gave his presentation changed from "oh dear" to "hand me the pitchfork." A silver lining is that it does seem that the Chinese community has been clear in emphasizing that it is not condoning this sort of wildcat experimentation, which is one fear that many people have had in the past.
> * Consent is tricky. The person who is affected is, by definition, not yet alive to offer consent. Given the potential consequences... it's something that is going to want a fairly involved discussion on how to properly seek consent.
Noone gives consent for their birth
> Furthermore, HIV transmission via paternal sperm donation is very easy to guard against with conventional methods; the gene knocked out may not have actually been sufficient to protect against the HIV strains the father had
Irrelevant, that it's not perfect doesn't mean it shouldn't be done. Many treatments are not perfect. Of course if it introduces new diseases then it's a problem, but dismissing it because it doesn't solve world hunger is weird.
Noone gives consent for their birth
> Furthermore, HIV transmission via paternal sperm donation is very easy to guard against with conventional methods; the gene knocked out may not have actually been sufficient to protect against the HIV strains the father had
Irrelevant, that it's not perfect doesn't mean it shouldn't be done. Many treatments are not perfect. Of course if it introduces new diseases then it's a problem, but dismissing it because it doesn't solve world hunger is weird.
> Irrelevant, that it's not perfect doesn't mean it shouldn't be done.
It's not a question of perfection. There are two strains of HIV, one that attacks CCR5, and another one where CCR5 is not involved. In Asia, the latter strain is more common than elsewhere in the world; about 25% or so of infections involve that strain. Dr. He appears to have made no attempt to actually ascertain which of the HIV strains were actually involved in the cases at hand.
The evidence is pretty damning that Dr. He was not motivated to conduct a medical experiment; he was motivated to become the first person to achieve CRISPR in humans, and the medical experimentation was merely a means to do it.
It's not a question of perfection. There are two strains of HIV, one that attacks CCR5, and another one where CCR5 is not involved. In Asia, the latter strain is more common than elsewhere in the world; about 25% or so of infections involve that strain. Dr. He appears to have made no attempt to actually ascertain which of the HIV strains were actually involved in the cases at hand.
The evidence is pretty damning that Dr. He was not motivated to conduct a medical experiment; he was motivated to become the first person to achieve CRISPR in humans, and the medical experimentation was merely a means to do it.
I was not referring to this particular case at all, I was speaking generally because I think the comment I replied to was also speaking generally. The fact that not all HIV strains might be cured (with this particular gene or any genes) does not mean we should not do it at all.
This is a vast, fundamental question in bioethics. The question is whether manipulating humans like this, even if technically successful, is good and right. The concerns might be religious or secular, or both. What do we want humanity to be? Do we really want a future where people tailor make babies? Like, what does it even mean to be human? For many people who think about these questions—myself included—the answers seem quite complicated.
Gene interactions remain poorly understood. Any such editing is potentially inflicting a lifetime of congenital disease on any child produced, from whom it's obviously impossible to get consent ahead of time.
As I understand it, though I haven't seen it clearly mentioned by the sibling comments, the primary issue is that applying this technique to human embryos will not only affect those embryos, but all their offspring. If you make a mistake there, the effects of that would be felt on the scale of humanity.
Because it completely turns a lot of our societies meta-narratives inside-out. One of them being that humans are born equal, how can we believe that we are created equally by a common creator if now some are being created to be "better" than everyone else?
Is there a point where we end up creating someone that isn't human? If they aren't human, what kind of rights are they to have? So many weird questions that we don't exactly have the answers ready at hand.
Is there a point where we end up creating someone that isn't human? If they aren't human, what kind of rights are they to have? So many weird questions that we don't exactly have the answers ready at hand.
This metanarrative as you decribe it is clearly false. More precisely, the idea is that humans should have equal rights and equal access to opportunities. In practice we don't even have that.
A meta-narrative doesn't require its promises to be realised physically for it to be "true" within a population. It's just a case of wether or not people "believe" it to be true.
Maybe clearly false to you, but certainly not to everyone.
Ethics aside, it might not be safe.
https://www.livescience.com/63075-crispr-damage-cell-mutatio...
https://www.livescience.com/63075-crispr-damage-cell-mutatio...
> Is it a question of the technology being still too immature or the more philosophical question of whether it should be used at all?
Yes, of course.
Yes, of course.
If it’s China, then the answer is simply that it’s embarrassing.
They could edit the DNA to do something truly horrendous. E.g. The Fly movie via DNA modification.
[deleted]
Are you being hyperbolic or do you actually think that the current (or at any point in the next few hundred years) genetic modification technology is capable of doing anything close to transforming humans to "fly-hybrid creature"?
There was some discussion that this gene isn't just related to HIV immunity but also related to memory and this may have been a different kind of experiment than was presented.
There are two studies indicating that CCR5 suppression improves fear/context memory in mice. There is also HIV-related dementia in humans. However, i dont think anyoen has studied significant memory effects in humans with a naturally defunct CCR5 gene. It is a stretch to extrapolate the mice results in humans, and He did not say that this was one of the goals of his study. His goal was to prevent HIV infection.
https://elifesciences.org/articles/20985
https://elifesciences.org/articles/20985
I don't know about his possibility of success or even learning anything, but just it being a remote possibility to me doesn't rule out the possibility that he was looking to see if he could impact memory.
I suspect any human enhancement type work will be highly experimental the first few (or more) rounds.
I suspect any human enhancement type work will be highly experimental the first few (or more) rounds.
possible that it's related to enhanced cognitive abilities, this was discussed after He's talk:
https://youtu.be/cH57-YO9Eso?t=5636
No good reason to believe it was chosen for a reason other than HIV immunity.
No good reason to believe it was chosen for a reason other than HIV immunity.
I'm skeptical considering the scientist let some unanswered questions about all this.
I'm noticing an interesting phenomenon on this topic. People are saying they an objection X, but upon inspection, it becomes clear that the actual fear has nothing to do with X.
For example the objection "this isn't a useful mutation," may be true, but it wouldn't justify outrage. It's the absence of a positive rather than the presence of a negative.
Or, for example, "the parents weren't informed properly," if true, might justify better communication with parents in the future but shouldn't slow down such genetic mutations on a wide-scale with informed consent. I imagine there are tens or hundreds of thousands of people willing to give informed consent.
I imagine it's something much more general like fear of the unknown, which is reasonable. But we should strive to be authentic in our arguments.
For example the objection "this isn't a useful mutation," may be true, but it wouldn't justify outrage. It's the absence of a positive rather than the presence of a negative.
Or, for example, "the parents weren't informed properly," if true, might justify better communication with parents in the future but shouldn't slow down such genetic mutations on a wide-scale with informed consent. I imagine there are tens or hundreds of thousands of people willing to give informed consent.
I imagine it's something much more general like fear of the unknown, which is reasonable. But we should strive to be authentic in our arguments.
The stated objections make sense if you consider that they include an unstated risk component: e.g. "This isn't a useful mutation [given that its downside effects predispose carriers to more severe flu and West Nile + risks inherent in the technique itself]", or "the parents weren't informed properly [and will have to live with the guilt/shame that their ignorance may have caused serious harm to their progeny for generations]"
There are even network/ecosystem risks: if governments get the idea that CRISPR's practical potential is trivial, or if potential participants can't trust practitioners, the entire field could suffer setbacks.
Crazy! Feel bad for the babies... Who knows if the Chinese government will even let them reproduce if they survive :/
How would that be enforced though? Forced abortions at any hospital because their IDs are on a national blacklist? What if they could just give at birth at home? And going overseas to give birth would obviously rear its head as an option at that point. Genie's out of the bottle, and everyone's trying to close it back up for now (which in my mind is the right decision; we have medical trials for new drugs and procedures for a good reason).
Forced sterilization.
I think it's somewhat interesting to consider this issue while thinking about the history of medical developments. Many things we now take for granted are the result of extremely unethical scientific work that often involved literal torture.
For instance in World War 2 Japan operated Unit 731 [1]. This unit was basically war crimes incarnate. That page has plenty of sordid details so there's no need to repeat them here. But the most interesting thing is that rather than being punished for some of the most heinous crimes committed against other humans, the scientists were secretly given immunity by the US in exchange for the data they gained through human experimentation. Victim accounts were then publicly dismissed as communist propaganda.
We did something similar with Germany and the Nazis. Operation Paperclip [2] involved the US recruiting some 1,600 scientists, engineers, and technicians that were involved in weapons development for the Nazis. Interestingly enough one man, Werner von Braun would go on to become the chief architect of the Saturn V launch vehicle that sent us to the moon. It led to an amusing satirical quote, "I aim at the stars, but sometimes I hit London." Granted weapons tech development is hardly in the same realm as human experimentation (even if the former is responsible for far more death than the latter), but it's kind of interesting that the people who created the weapon systems were immensely rewarded while nameless recruits who played no particularly unique or meaningful role were castigated as the irredeemables.
The point of this is that whichever nation, group, or individual achieves progress on positive and clearly productive human genetic modification will likely receive immense accolades and support, even if in secret, regardless of what our public stance on the behavior may be. It's interesting to consider the somewhat bizarre system of motivations and consequences/rewards that we create in the pursuit of the appearance of morality.
[1] - https://en.wikipedia.org/wiki/Unit_731
[2] - https://en.wikipedia.org/wiki/Operation_Paperclip
For instance in World War 2 Japan operated Unit 731 [1]. This unit was basically war crimes incarnate. That page has plenty of sordid details so there's no need to repeat them here. But the most interesting thing is that rather than being punished for some of the most heinous crimes committed against other humans, the scientists were secretly given immunity by the US in exchange for the data they gained through human experimentation. Victim accounts were then publicly dismissed as communist propaganda.
We did something similar with Germany and the Nazis. Operation Paperclip [2] involved the US recruiting some 1,600 scientists, engineers, and technicians that were involved in weapons development for the Nazis. Interestingly enough one man, Werner von Braun would go on to become the chief architect of the Saturn V launch vehicle that sent us to the moon. It led to an amusing satirical quote, "I aim at the stars, but sometimes I hit London." Granted weapons tech development is hardly in the same realm as human experimentation (even if the former is responsible for far more death than the latter), but it's kind of interesting that the people who created the weapon systems were immensely rewarded while nameless recruits who played no particularly unique or meaningful role were castigated as the irredeemables.
The point of this is that whichever nation, group, or individual achieves progress on positive and clearly productive human genetic modification will likely receive immense accolades and support, even if in secret, regardless of what our public stance on the behavior may be. It's interesting to consider the somewhat bizarre system of motivations and consequences/rewards that we create in the pursuit of the appearance of morality.
[1] - https://en.wikipedia.org/wiki/Unit_731
[2] - https://en.wikipedia.org/wiki/Operation_Paperclip
He is my hero! I want my future children genes augmented!
You must read the book "The Revolutionary Phenotype: The amazing story of how life begins and how it ends" by J.F. Gariepy, PhD.. It outlines how genetic modification will eventually result in DNA being replaced completely with a new system if we continue down this path.
Watch this short clip where he explains in detail what the book is about: https://youtu.be/mFQk7ausjd8?t=131
I do not mean to be advertising for him, I feel it's important for people to understand that what will happen will be equivalent to RNA based lifeforms being replaced with DNA based lifeforms...
Here is the Amazon page if anyone's interested: https://www.amazon.com/Revolutionary-Phenotype-amazing-story...
Watch this short clip where he explains in detail what the book is about: https://youtu.be/mFQk7ausjd8?t=131
I do not mean to be advertising for him, I feel it's important for people to understand that what will happen will be equivalent to RNA based lifeforms being replaced with DNA based lifeforms...
Here is the Amazon page if anyone's interested: https://www.amazon.com/Revolutionary-Phenotype-amazing-story...
Well, I strike more of a middle-ground. I don't personally expect to benefit from the technology. But I'm glad there are "early adopters" who will advance the science.
I figure, big picture -- The earth has had numerous great extinction events[1], if another happens, the ability to modify our genes may be the thing that keeps the race alive.
[1] https://en.wikipedia.org/wiki/Extinction_event
I figure, big picture -- The earth has had numerous great extinction events[1], if another happens, the ability to modify our genes may be the thing that keeps the race alive.
[1] https://en.wikipedia.org/wiki/Extinction_event
Nah
Genetic engineering is a tricky one. It seems unethical but if you think about it.... there is nothing inherently immoral about creating a genetically superior baby.
It's our own sense of insecurity and disgust thats inhibits this technology from crossing the line.
Don't get me wrong, I'm all for restricting this technology. I don't want to live in a world like the one portrayed by Gattaca simply because of the fact that my children and I will never be the ones that are genetically superior.
It's our own sense of insecurity and disgust thats inhibits this technology from crossing the line.
Don't get me wrong, I'm all for restricting this technology. I don't want to live in a world like the one portrayed by Gattaca simply because of the fact that my children and I will never be the ones that are genetically superior.
The risk isn’t that we create something superior. It’s that we fail and subject babies/children/people to suffering that we can’t predict or imagine.
Gene editing can go very wrong.
You change one little thing and it produces myriad unexpected effects.
Gene editing can go very wrong.
You change one little thing and it produces myriad unexpected effects.
Almost exactly... like nature does?
Much of genetic engineering is a blackbox. Many macro physical traits are associated with a gene (or several genes) through a probabilistic quantity indicating that a lot of what we are dealing with is a blackbox where we only establish correlations with inputs and outputs. However, I am addressing the ethics of genetically engineering humans not the ethics of using a technology where we possess limited understanding. The gap of understanding is closing and will no longer be a valid excuse in the near future.
In fact, there are many traits and genetic diseases where we know 100% the mechanism that triggers it all the way down to gene. See here:
https://www.genome.gov/10001204/specific-genetic-disorders/
What is the ethical reasoning stopping people from using CRISPR on these diseases?
I am still against the usage of CRISPR to cure these diseases because it opens a door for the creation of a race of genetically superior humans. I am against this purely for selfish reasons.
In fact, there are many traits and genetic diseases where we know 100% the mechanism that triggers it all the way down to gene. See here:
https://www.genome.gov/10001204/specific-genetic-disorders/
What is the ethical reasoning stopping people from using CRISPR on these diseases?
I am still against the usage of CRISPR to cure these diseases because it opens a door for the creation of a race of genetically superior humans. I am against this purely for selfish reasons.
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The problem in Gattaca world is not the genetic modification.
It is the assumption that worth of the individual can be judged by genetics alone, that fitness for the job can be determined by something other than merit.
In this way Gattaca is a really harmful movie, it decives viewers into thinking that genetic editing is bad, but in fact shows only failures of a non-free society, which is bad independantly from any technology.
In this way Gattaca is a really harmful movie, it decives viewers into thinking that genetic editing is bad, but in fact shows only failures of a non-free society, which is bad independantly from any technology.
I find it bad in the sense, other people can be modified to be superior at birth while it's already too late for me.
I agree that is sad, but already many people are way smarter than me without any artificial modifications.
If i could pick i'd prefer to live in a world where there are thousands of people like Feynman and most people are smarter than me, instead of a world where all people are about as smart as me, and progress in science is correspondingly slow.
If i could pick i'd prefer to live in a world where there are thousands of people like Feynman and most people are smarter than me, instead of a world where all people are about as smart as me, and progress in science is correspondingly slow.
Sure there are people smarter than you. But I don't want to be pushed lower on the rung of the ladder of genetic superiority. An important human need that has to be satisfied whether we care to admit it or not is that we need to feel better than others at something.
I wouldn't worry about that either.
If it is about superiority of children much younger than you, you do not have anything to worry, because they'll be superior anyway simply by being much younger.
If it is about children that will become adults before you going to pension, you should be only happy about them being significantly smarter, because that will increase your chances of learning about new science, having much better computers, and maybe even living much longer, if they manage to make a good progress in biology.
If it is about superiority of children much younger than you, you do not have anything to worry, because they'll be superior anyway simply by being much younger.
If it is about children that will become adults before you going to pension, you should be only happy about them being significantly smarter, because that will increase your chances of learning about new science, having much better computers, and maybe even living much longer, if they manage to make a good progress in biology.
Genetics is already a lucky dip. Intelligence appears to be highly heritable. If there is a couple that both have low IQ's below the 20th percentile then is it moral to tell them that there is a way for their child to be intelligent?
What about health? Social skills? Good looks? Looks have a huge impact on your life (i.e. halo effect).
What about health? Social skills? Good looks? Looks have a huge impact on your life (i.e. halo effect).
Of course it is, why not? I even believe it's immoral to let the kids struggle from inheriting their parents disadvantages in intelligence and health when it is possible to save them from that. As for social skills and appearence, however, this is not so straightforward as the first is complicated and the second is subjective. Psychopaths and dominant characters can make amazing social players but I doubt it's nice (both to the person and to whoever is going to have to deal with them) to pre-program a person with these traits. Unusual appearance can sometimes be more cool than nazi-style unified perfection.
Looks may be subjective but most people tend to somewhat agree on who is and is not attractive. A large number of women think George Clooney is attractive and that Danny Devito isn't. If you take two babies who are identical in every way except one will look like George and one will look like Danny then they will have very different lives. Looking good makes people assume you have good traits.
> A large number of women think George Clooney is attractive and that Danny Devito isn't.
Nevertheless Danny Devito is extremely charismatic and if I were him I would certainly appreciate my parents didn't modify my genes to make me look a different way. In fact my actual look is much more close to that of George Clooney than Danny Devito but if I could choose now I would prefer to change my look into exactly that od Danny Devito than of George Clooney. This is exactly the example of how subjective this is.
Nevertheless Danny Devito is extremely charismatic and if I were him I would certainly appreciate my parents didn't modify my genes to make me look a different way. In fact my actual look is much more close to that of George Clooney than Danny Devito but if I could choose now I would prefer to change my look into exactly that od Danny Devito than of George Clooney. This is exactly the example of how subjective this is.
I don't thing the problem really is about genetically engineering babies. I mean, we are already creating superhumans that are immune to some diseases with vaccines, genetic engineering is just a step further.
The real problem is that it is essentially unauthorized experiments on human subjects. Just like with drugs, there is a process ensuring the risks are minimized. And it look like they skipped all that.
Gene editing also has specific challenges:
- They are babies, they can't give consent themselves.
- They are (presumably) healthy to begin with. It is not a case of "with that experimental treatment, you may die, but without it, you definitely will".
- The treatment may also affect the offspring in unexpected ways.
The real problem is that it is essentially unauthorized experiments on human subjects. Just like with drugs, there is a process ensuring the risks are minimized. And it look like they skipped all that.
Gene editing also has specific challenges:
- They are babies, they can't give consent themselves.
- They are (presumably) healthy to begin with. It is not a case of "with that experimental treatment, you may die, but without it, you definitely will".
- The treatment may also affect the offspring in unexpected ways.
When I refer to super-humans I mean better-looking, faster, stronger, and smarter. I'm not talking about smallpox immunity.
Point three of yours is the primary concern with 'superhumans', so its unlike vaccines entirely. It's not about the individual at all, its about the new species we'd be creating, that would reproduce on its own. How many edits would it take?
Our "genetically superior" crops and livestock are anything but (they're inherently fragile and vulnerable to all sorts of unforeseeable conditions), and these were obtained by methods that were far less inherently fiddly than CRISPR. Even most existing GMO techniques are more robust than CRISPR! And you think it's okay to pursue those same goals and techniques in humans? Sorry but this makes zero sense.
Is GMO really any different than selective breeding, which has been going on for 10s of thousands of years, except for the time scale and precision of the changes? Yes, there may be unintended side effects, but that can be true with selective breeding.
Look at what we've done to dogs and how some breeds can hardly breath, others are predisposed to hip dysplasia, others yet prone to hearing issues, and we did all of that without genetic engineering.
Look at what we've done to dogs and how some breeds can hardly breath, others are predisposed to hip dysplasia, others yet prone to hearing issues, and we did all of that without genetic engineering.
> Is GMO really any different than selective breeding
Yes, GMO is very different.
1. GMO crops are genetic clones. We have never experienced such small amounts of genetic diversity in our crops. This creates unique liabilities.
2. Timescales matter. Perhaps skilled breeders could create the exact same genome of a GMO crop we have today in 10,000 years. However the environment will be given much more time between each mutation, and each mutation will take more time before it spreads across the entire population. This gives other forms of life a fighting chance. Ecosystems fail when they are dominated by a single organism.
3. While our yields are much higher today, our farming practices are much less substainable than they were in the past. The types of farming practices GMOs promote are part of the move towards less substainable farming.
Yes, GMO is very different.
1. GMO crops are genetic clones. We have never experienced such small amounts of genetic diversity in our crops. This creates unique liabilities.
2. Timescales matter. Perhaps skilled breeders could create the exact same genome of a GMO crop we have today in 10,000 years. However the environment will be given much more time between each mutation, and each mutation will take more time before it spreads across the entire population. This gives other forms of life a fighting chance. Ecosystems fail when they are dominated by a single organism.
3. While our yields are much higher today, our farming practices are much less substainable than they were in the past. The types of farming practices GMOs promote are part of the move towards less substainable farming.
What's to stop nation states from pursuing eugenics projects behind closed doors? Should it be assumed they already are?
The main thing to stop it is that we don’t know what genes to target to make super humans. If we did, someone would probably try. As perhaps they should, under some ethical systems.
They dont need super humans to gain technological superiority... just the best hackers: engineers and scientists.
Our relatively enlarged skulls are the result of a random mutation which gave some human/monkey, 2.4 million years ago, a diminutive, inferior jaw.(1) They would have looked like a freak at the time.
Russian scientists have bred dog-like creatures from wolves in the last century. In other words, they dont necessarily need to know which genes or pairings produce their desired results. Trial and error is sufficient. And I dont imagine every nation state is beholden to ethical standards. All they'd need is educated guesses, and then to select their desired traits from a litter of humans, euthanize the rest, and repeat. Hopefully this is not happening, as it makes me feel ill to think about.
Of course, human gestation and maturity has a longer turnover, but gene editing could produce accelerated results compared to classical breeding of traits.
1-https://www.nature.com/news/2004/040322/full/news040322-9.ht...
Our relatively enlarged skulls are the result of a random mutation which gave some human/monkey, 2.4 million years ago, a diminutive, inferior jaw.(1) They would have looked like a freak at the time.
Russian scientists have bred dog-like creatures from wolves in the last century. In other words, they dont necessarily need to know which genes or pairings produce their desired results. Trial and error is sufficient. And I dont imagine every nation state is beholden to ethical standards. All they'd need is educated guesses, and then to select their desired traits from a litter of humans, euthanize the rest, and repeat. Hopefully this is not happening, as it makes me feel ill to think about.
Of course, human gestation and maturity has a longer turnover, but gene editing could produce accelerated results compared to classical breeding of traits.
1-https://www.nature.com/news/2004/040322/full/news040322-9.ht...
> Russian scientists have bred dog-like creatures from wolves in the last century.
Foxes, not wolves: https://en.wikipedia.org/wiki/Domesticated_red_fox
Foxes, not wolves: https://en.wikipedia.org/wiki/Domesticated_red_fox
In past China openly pursued eugenics projects: https://www.chicagotribune.com/news/ct-xpm-1995-01-17-950117... (no idea if it still happens).
>no idea if it still happens
It does.
Medical check is a prerequisite for a marriage certificate. Children born outside marriage are doomed to nonpersonhood
It does.
Medical check is a prerequisite for a marriage certificate. Children born outside marriage are doomed to nonpersonhood
Well, china is already harvesting organs from political prisoners so that isn't too far of a stretch [0].
[0]: https://en.m.wikipedia.org/wiki/Organ_harvesting_from_Falun_...
[0]: https://en.m.wikipedia.org/wiki/Organ_harvesting_from_Falun_...
Harvesting organs can directly benefit the regime. The risk is bad PR, but that may be mitigated by making it secret.
The gene editing of embryoes, if successful, benefits only the unborn and their future generation. The political party (and those in charge) don't directly benefit - but they suffer the bad PR and backlash if failure happens.
The cost/benefit analysis tells me that this isn't worth risking at all.
The gene editing of embryoes, if successful, benefits only the unborn and their future generation. The political party (and those in charge) don't directly benefit - but they suffer the bad PR and backlash if failure happens.
The cost/benefit analysis tells me that this isn't worth risking at all.
I mean it wouldn't be the first time a leader builtna foundation for their successive generation.
The technology is risky enough I am sure normal parents won't attempt to put their kids for experiments.
And I am sure nations won't be interested in this as well, because the risk is high, the failures are unknown, and for the most part, the reward gets too long to reap.
And I am sure nations won't be interested in this as well, because the risk is high, the failures are unknown, and for the most part, the reward gets too long to reap.
What about desperate people going through desperate times?
Having Hutingtons, hoping for a cure for any kids you want to have?
If you make the doctor liable, then I don't think any one of them will help in that regard.
About the only country that currently might be able to conduct such a program in secret is North Korea.
And if they haven't done so yet, the publicity around this incident could push them over the edge.
And if they haven't done so yet, the publicity around this incident could push them over the edge.
The US was all for eugenics in the past until Hitler copied them.
https://en.m.wikipedia.org/wiki/Eugenics_in_the_United_State...
https://en.m.wikipedia.org/wiki/Eugenics_in_the_United_State...
Yes but that was a considerable period of time ago (in relative terms).
Also it is almost directly the result of what the western powers (and Japan did) in that period that we have the incredibly strict ethics regime around medical research to this day.
I think when it comes any of this stuff the https://en.wikipedia.org/wiki/Precautionary_principle is the best framework we have at present.
Also it is almost directly the result of what the western powers (and Japan did) in that period that we have the incredibly strict ethics regime around medical research to this day.
I think when it comes any of this stuff the https://en.wikipedia.org/wiki/Precautionary_principle is the best framework we have at present.
Has anyone read the full article?
It's writing clearly that the couple made consent on false given information, as they thought it was a type of vaccination. That lack of transparency is unethical.
The documents of his study were published on his website , can still be found in archive:
Informed consent: https://web.archive.org/web/20181128061149/http://www.sustc-...
Second informed consent; https://web.archive.org/web/20181128061153/http://www.sustc-...
Ethical approval: https://web.archive.org/web/20181128061204/http://www.sustc-...
Clinical registry: https://web.archive.org/web/20181128061216/http://www.sustc-...
There is also some info including an excel file with the outcomes of the trial here: http://www.chictr.org.cn/showproj.aspx?proj=32758
Informed consent: https://web.archive.org/web/20181128061149/http://www.sustc-...
Second informed consent; https://web.archive.org/web/20181128061153/http://www.sustc-...
Ethical approval: https://web.archive.org/web/20181128061204/http://www.sustc-...
Clinical registry: https://web.archive.org/web/20181128061216/http://www.sustc-...
There is also some info including an excel file with the outcomes of the trial here: http://www.chictr.org.cn/showproj.aspx?proj=32758
Blog spam, the NYT article appears to be the primary and only source:
https://www.nytimes.com/2018/12/28/world/asia/he-jiankui-chi...
https://www.nytimes.com/2018/12/28/world/asia/he-jiankui-chi...
The techchrunch article appears to contain additional updates and firsthand reporting. It isn't blogspam.
cauldron(1)
Is Dr He a scientist or a medical doctor? I don't think even in China scientists get to muck around with patients. If he is a medical doctor can we stop calling him a scientist.
On a serious note, although this may seem humorous, if any technology was a candidate to start a zombie apocalypse this would be it.
Small chance, yes, but with so little understood about what non-coding DNA does, and viruses shuttling genetic material around, who knows.
Small chance, yes, but with so little understood about what non-coding DNA does, and viruses shuttling genetic material around, who knows.
They will likely make an example of him since he's such a public figure now. Whether they can really change the culture there is to be seen, but one thing China knows how to do is add layers of administration to select areas.
Ever since CRISPR was announced people have always been scared of what "rouge" actors could be do, now that this technology it's so 'democratized'. It was probably bound to happen somewhere. So they'll be interested in clamping down hard on the early minor cases of ethical violations, in order to protect against other much more deliberately malicious future cases.
[1] https://www.nature.com/articles/d41586-018-07740-z