Nexus 0.1
November 27, 2018 5:14 AM Subscribe
Chinese scientists are creating CRISPR babies - "A daring effort is under way to create the first children whose DNA has been tailored using gene editing."
China Scientist's Claim on World's First Gene-Edited Babies Sparks Denials - "He Jiankui, a researcher in the southern Chinese city of Shenzhen, said he altered the genes of a pair of twin girls born this month while they were embryos, the Associated Press reported. The goal was to make the babies resistant to the virus that causes AIDS, the scientist said."
China Opens a 'Pandora's Box' of Human Genetic Engineering - "Yet whatever the veracity of He's claims, it's likely that China, with its aggressively entrepreneurial startups and less stringent regulation, will be the country where researchers most rapidly test the currently accepted boundaries of genetic manipulation."
Genetically Modified Babies Were Inevitable as DNA Tech Advanced - "You can be a Ph.D. and have your own lab and be doing some of these techniques in your basement."
also btw...
China Scientist's Claim on World's First Gene-Edited Babies Sparks Denials - "He Jiankui, a researcher in the southern Chinese city of Shenzhen, said he altered the genes of a pair of twin girls born this month while they were embryos, the Associated Press reported. The goal was to make the babies resistant to the virus that causes AIDS, the scientist said."
China Opens a 'Pandora's Box' of Human Genetic Engineering - "Yet whatever the veracity of He's claims, it's likely that China, with its aggressively entrepreneurial startups and less stringent regulation, will be the country where researchers most rapidly test the currently accepted boundaries of genetic manipulation."
Genetically Modified Babies Were Inevitable as DNA Tech Advanced - "You can be a Ph.D. and have your own lab and be doing some of these techniques in your basement."
also btw...
- The 'Geno-Economists' Say DNA Can Predict Our Chances of Success - "Critics counter that their methods are naïve, offensive or both, but all agree: Either way, multigene testing will lead to a social upheaval."
- Exclusive: A new test can predict IVF embryos' risk of having a low IQ - "A new genetic test that enables people having IVF to screen out embryos likely to have a low IQ or high disease risk could soon become available in the US."
- A slippery slope towards designer babies? - "You don't need genetic engineering to create designer babies. All you need is genetic screening. And rich people are already doing it."
- Super-smart designer babies could be on offer soon. But is that ethical? - "Before we get too indignant about the horrors of designer babies, bear in mind that already we permit, even in the UK, prenatal screening for Down's syndrome, a disability that produces low to moderate intellectual disability. It's not easy to make a moral or philosophical case that the screening offered by Genomic Prediction for low IQ is any different. There may be more uncertainty but, given not all IVF embryos will be implanted anyway, can we object to tipping the scales? And how can we condone efforts to improve your child's intelligence after birth but not before? The questions are complicated. How to balance individual rights against what is good for society as a whole? When does avoidance of disease and disability shade into enhancement? Should society be more receptive to disability rather than seeing it as something to be eradicated? When does choice become tyranny?"
- Gene editing and the 'nature vs. nurture' debate - "A lax attitude toward gene editing might turn those countries into dystopias. Or force us to follow suit to stay competitive. Or both."
- It's Official, The Transhuman Era Has Begun - "Over the next decade, humanity will begin its 'transhuman' era: Biology can then be hacked, depending on lifestyle, interests and health needs. Biohacking falls into four categories: technology augmentation, nutrigenomics, experimental biology and grinder biohacking."
Apparently the researcher is suspended and under investigation now and his university is disowning him.
posted by talos at 5:48 AM on November 27, 2018 [7 favorites]
posted by talos at 5:48 AM on November 27, 2018 [7 favorites]
Whether or not genetically modified children are inevitable, am I right in understanding that in this particular case there has been no actual evidence that this scientist did what he claimed he did?
posted by Sangermaine at 6:12 AM on November 27, 2018 [5 favorites]
posted by Sangermaine at 6:12 AM on November 27, 2018 [5 favorites]
My concern about these developments is that people's understandable fears about the technology may mean that the debate polarises into a crude pro/anti divide, preventing a proper discussion about safeguards and regulation until it's too late to make a real difference. I feel like this is what has happened around GM foods: it feels like there has been excessive focus on whether we should follow that path, and too little public interest in policy to maximise benefits and reduce harm.
Humanity has never shown itself capable of resisting a technology once it exists, and I don't think we'll resist this one. We need a legal structure to control it, but I don't feel like there has been any attempt to foster a real public debate about how that should work. Given the state of the world at the moment, and the vested interests here that have much to lose from proper regulation, I'm not confident that there's much chance of proper democratic oversight.
posted by howfar at 6:17 AM on November 27, 2018 [12 favorites]
Humanity has never shown itself capable of resisting a technology once it exists, and I don't think we'll resist this one. We need a legal structure to control it, but I don't feel like there has been any attempt to foster a real public debate about how that should work. Given the state of the world at the moment, and the vested interests here that have much to lose from proper regulation, I'm not confident that there's much chance of proper democratic oversight.
posted by howfar at 6:17 AM on November 27, 2018 [12 favorites]
Given the state of the world at the moment, and the vested interests here that have much to lose from proper regulation, I'm not confident that there's much chance of proper democratic oversight.
The research was undertaken in China.
posted by chappell, ambrose at 6:19 AM on November 27, 2018 [1 favorite]
The research was undertaken in China.
posted by chappell, ambrose at 6:19 AM on November 27, 2018 [1 favorite]
I don't see the risk so much that 1%ers will use this to make super babies, their children already have enough of a headstart anyway, but rather that they use it to create better worker drones, capable of working longer hours while not demanding a living wage, long term contracts or much else.
posted by signal at 6:29 AM on November 27, 2018 [3 favorites]
posted by signal at 6:29 AM on November 27, 2018 [3 favorites]
The research was undertaken in China.
Yes. I am aware of that. Which is all the more reason for democratic countries to respond to the development of the technology. Did you really think I was talking about this specific research being regulated? Maybe you think research results from China can't be used by researchers overseas? I'm slightly struggling to grasp the point you're making about what I said. May you were just feeling like doing a "gotcha"? Guess we've all gotta get our kicks somewhere.
posted by howfar at 6:31 AM on November 27, 2018 [4 favorites]
Yes. I am aware of that. Which is all the more reason for democratic countries to respond to the development of the technology. Did you really think I was talking about this specific research being regulated? Maybe you think research results from China can't be used by researchers overseas? I'm slightly struggling to grasp the point you're making about what I said. May you were just feeling like doing a "gotcha"? Guess we've all gotta get our kicks somewhere.
posted by howfar at 6:31 AM on November 27, 2018 [4 favorites]
"All men are physico-chemically equal," said Henry sententiously. "Besides, even Epsilons perform indispensable services."
posted by Glomar response at 6:35 AM on November 27, 2018 [10 favorites]
posted by Glomar response at 6:35 AM on November 27, 2018 [10 favorites]
The great art of our past has foreseen this.
posted by ardgedee at 6:44 AM on November 27, 2018 [1 favorite]
posted by ardgedee at 6:44 AM on November 27, 2018 [1 favorite]
Did you really think I was talking about this specific research being regulated? Maybe you think research results from China can't be used by researchers overseas? I'm slightly struggling to grasp the point you're making about what I said.
Yes, I thought you were talking about the regulation of this specific research (CRISPR-edited humans), and I agree with you that there isn’t any chance of democratic oversight, given that it took place in China - oversight, yes; democratic oversight, no, by definition.
Other regulatory regimes may limit this technology, although there’s nothing to stop birth tourism to places where the rules might be different, or laxly enforced. So the “democratic oversight” seems like a non-starter to me, since the technology is not subject to a global regulatory regime, and it was developed in a non-democratic country. (You might as well hope for democratic oversight of antibiotic usage.)
posted by chappell, ambrose at 6:51 AM on November 27, 2018 [1 favorite]
Yes, I thought you were talking about the regulation of this specific research (CRISPR-edited humans), and I agree with you that there isn’t any chance of democratic oversight, given that it took place in China - oversight, yes; democratic oversight, no, by definition.
Other regulatory regimes may limit this technology, although there’s nothing to stop birth tourism to places where the rules might be different, or laxly enforced. So the “democratic oversight” seems like a non-starter to me, since the technology is not subject to a global regulatory regime, and it was developed in a non-democratic country. (You might as well hope for democratic oversight of antibiotic usage.)
posted by chappell, ambrose at 6:51 AM on November 27, 2018 [1 favorite]
I used to be all about this idea until all the information came out that CRISPR, surprise surprise, has downstream consequences.
posted by Anonymous at 6:57 AM on November 27, 2018
posted by Anonymous at 6:57 AM on November 27, 2018
Setting aside the ethical problems of the test, if you read the AP report that broke the story in the English language, it seems like it's just a bunch of bullshit. The results of the "gene editing" have not been verified, and gene editing may not have taken place.
They also noted evidence that the editing was incomplete and that at least one twin appears to be a patchwork of cells with various changes.
“It’s almost like not editing at all” if only some of certain cells were altered, because HIV infection can still occur, Church said.
[...]
The use of that embryo suggests that the researchers’ ”main emphasis was on testing editing rather than avoiding this disease,” Church said.
posted by JamesBay at 7:06 AM on November 27, 2018 [4 favorites]
They also noted evidence that the editing was incomplete and that at least one twin appears to be a patchwork of cells with various changes.
“It’s almost like not editing at all” if only some of certain cells were altered, because HIV infection can still occur, Church said.
[...]
The use of that embryo suggests that the researchers’ ”main emphasis was on testing editing rather than avoiding this disease,” Church said.
posted by JamesBay at 7:06 AM on November 27, 2018 [4 favorites]
I'd be happy with just a tail.
posted by Lipstick Thespian at 7:17 AM on November 27, 2018 [12 favorites]
posted by Lipstick Thespian at 7:17 AM on November 27, 2018 [12 favorites]
Anything that reduces the number of soggy, mushy babies is fine with me.
posted by Spathe Cadet at 7:26 AM on November 27, 2018 [9 favorites]
posted by Spathe Cadet at 7:26 AM on November 27, 2018 [9 favorites]
So how bad is this on a scale of Khan Noonien Singh to Magneto?
posted by Servo5678 at 7:27 AM on November 27, 2018 [4 favorites]
posted by Servo5678 at 7:27 AM on November 27, 2018 [4 favorites]
I put it at about a Sauron. (Not the LOTR one, the other one.)
posted by Strange Interlude at 7:30 AM on November 27, 2018 [4 favorites]
posted by Strange Interlude at 7:30 AM on November 27, 2018 [4 favorites]
It it seems like He just picked HIV research as a sympathetic angle
The HIV focus was likely intended to make it easier to find parental volunteers. From the AP/WaPo story I linked to above:
He recruited couples through a Beijing-based AIDS advocacy group called Baihualin. Its leader, known by the pseudonym “Bai Hua,” told the AP that it’s not uncommon for people with HIV to lose jobs or have trouble getting medical care if their infections are revealed.
posted by JamesBay at 7:36 AM on November 27, 2018 [1 favorite]
The HIV focus was likely intended to make it easier to find parental volunteers. From the AP/WaPo story I linked to above:
He recruited couples through a Beijing-based AIDS advocacy group called Baihualin. Its leader, known by the pseudonym “Bai Hua,” told the AP that it’s not uncommon for people with HIV to lose jobs or have trouble getting medical care if their infections are revealed.
posted by JamesBay at 7:36 AM on November 27, 2018 [1 favorite]
So the “democratic oversight” seems like a non-starter to me, since the technology is not subject to a global regulatory regime, and it was developed in a non-democratic country.
Except that the impact of regulatory oversight isn't limited to allowing or disallowing. For example, what are the obligations of public health providers/insurers going to be? Will genomic improvement be regarded as something that public money should be spent on? Do we need to fund research at this point in order to strategically control the intellectual property from a geopolitical perspective? If we do restrict these technologies, which ones? What policies should be in place to sanction/support those who have been subject to these technologies unlawfully? Do we need to tax people who have been subject to these technologies differently and if so, how?
The list goes on and on. These are questions that will need to be answered. I would suggest that democratic oversight isn't a "non starter"; rather it is something that we have a basic obligation to ensure. Because the alternative is that the rules get made to the advantage of only the rich and powerful, without even the small protections that "effective democracy" (such as it is under capitalism) produces for the rest of us.
I am surprised to find that the idea of appropriately regulating technology is controversial. Even if we disagree about what should be done, surely we can agree that something should be done?
posted by howfar at 7:55 AM on November 27, 2018 [3 favorites]
Except that the impact of regulatory oversight isn't limited to allowing or disallowing. For example, what are the obligations of public health providers/insurers going to be? Will genomic improvement be regarded as something that public money should be spent on? Do we need to fund research at this point in order to strategically control the intellectual property from a geopolitical perspective? If we do restrict these technologies, which ones? What policies should be in place to sanction/support those who have been subject to these technologies unlawfully? Do we need to tax people who have been subject to these technologies differently and if so, how?
The list goes on and on. These are questions that will need to be answered. I would suggest that democratic oversight isn't a "non starter"; rather it is something that we have a basic obligation to ensure. Because the alternative is that the rules get made to the advantage of only the rich and powerful, without even the small protections that "effective democracy" (such as it is under capitalism) produces for the rest of us.
I am surprised to find that the idea of appropriately regulating technology is controversial. Even if we disagree about what should be done, surely we can agree that something should be done?
posted by howfar at 7:55 AM on November 27, 2018 [3 favorites]
Thanks to schroedinger for some scientific studies on the potential problems of crispr. Have been meaning to look further into them.
Sooner or later people will figure this technology out to work in humans. It will hopefully lead to cures to some nasty genetic diseases, but I am also scared what other cyberpunk sci fi nighmare gene editing could unleash.
posted by Megustalations at 7:56 AM on November 27, 2018
Sooner or later people will figure this technology out to work in humans. It will hopefully lead to cures to some nasty genetic diseases, but I am also scared what other cyberpunk sci fi nighmare gene editing could unleash.
posted by Megustalations at 7:56 AM on November 27, 2018
The research was undertaken in China.
Proper Communist ideological tutelage/Xi Jinping thought then, perhaps?
posted by acb at 7:58 AM on November 27, 2018 [1 favorite]
Proper Communist ideological tutelage/Xi Jinping thought then, perhaps?
posted by acb at 7:58 AM on November 27, 2018 [1 favorite]
I'm not even sure you have to ponder the "democratic oversight" of this so-called trial.
The oversight was a joke. The test was overseen by two American physicists, who have about as much understanding of genetic testing as Michio Kaku or any other talking head.
The Harmonicare "ethics panel" was also a joke. Once again, the second half of the AP/WaPo article is loaded with also sorts of WTF moments.
Story seems like total bullshit that has been amplified by click-seeking Western science journalism, when it really needs thoughtful analysis.
posted by JamesBay at 8:03 AM on November 27, 2018 [1 favorite]
The oversight was a joke. The test was overseen by two American physicists, who have about as much understanding of genetic testing as Michio Kaku or any other talking head.
The Harmonicare "ethics panel" was also a joke. Once again, the second half of the AP/WaPo article is loaded with also sorts of WTF moments.
Story seems like total bullshit that has been amplified by click-seeking Western science journalism, when it really needs thoughtful analysis.
posted by JamesBay at 8:03 AM on November 27, 2018 [1 favorite]
Nah, two so far, and he has attempted this with at least 7 couples so perhaps more. And of course there will be others.
No, that article just repeats the claims of the researchers, and links to news stories with their claims. There doesn't appear to be any independent verification of what they claim to have done. It's all very odd.
posted by Sangermaine at 8:37 AM on November 27, 2018
No, that article just repeats the claims of the researchers, and links to news stories with their claims. There doesn't appear to be any independent verification of what they claim to have done. It's all very odd.
posted by Sangermaine at 8:37 AM on November 27, 2018
I am surprised to find that the idea of appropriately regulating technology is controversial. Even if we disagree about what should be done, surely we can agree that something should be done?
I think we’re talking at cross-purposes. You’re making normative statements (which I agree with) about the desirability of regulation. I’m making descriptive statements about the practicality of regulation: the bag is flapping in the breeze, the cat is over the horizon.
Putting aside for the moment whether the “democratic” part is important, and focusing on the “oversight” part - there’s a reason that this research took place in China. He’s collaborator, Deem, is an American, and He worked for top institutions in the States before coming back to China under the Thousand Talents Plan. Neither of them would have got this past an IRB in the US. I’m not saying that the Chinese authorities wanted this to happen - actually, they seem furious to have learnt about it after the event - I’m saying that their regulatory landscape is fragmented and lacks proper controls. Additionally, the medical profession in China is low-status, underpaid and does not tend to attract top talent, so it’s relatively straightforward to run unethical research within Chinese hospitals, which appears to have happened here. From an article on CRISPR gene therapies in (adult) humans:
posted by chappell, ambrose at 8:40 AM on November 27, 2018 [3 favorites]
I think we’re talking at cross-purposes. You’re making normative statements (which I agree with) about the desirability of regulation. I’m making descriptive statements about the practicality of regulation: the bag is flapping in the breeze, the cat is over the horizon.
Putting aside for the moment whether the “democratic” part is important, and focusing on the “oversight” part - there’s a reason that this research took place in China. He’s collaborator, Deem, is an American, and He worked for top institutions in the States before coming back to China under the Thousand Talents Plan. Neither of them would have got this past an IRB in the US. I’m not saying that the Chinese authorities wanted this to happen - actually, they seem furious to have learnt about it after the event - I’m saying that their regulatory landscape is fragmented and lacks proper controls. Additionally, the medical profession in China is low-status, underpaid and does not tend to attract top talent, so it’s relatively straightforward to run unethical research within Chinese hospitals, which appears to have happened here. From an article on CRISPR gene therapies in (adult) humans:
Crispr trials on humans have been relatively slow to develop in the US and UK in part due to concerns over how the risk of the procedure is communicated to patients. The Penn scientists first had to consult with an advisory board from the National Institutes of Health set up specifically to evaluate the potential risks and benefits of Crispr therapies, then get approval from the US Food and Drug Administration.If I wanted to e.g. offer this as a discreet service to rich people with a high appetite for risk and a heritable genetic disorder, I’d do this in China, and I find it hard to see how US or other authorities would be able to stop me.
The FDA approved three gene therapies for treatment in 2017, none of which use Crispr.
[...]
The Chinese ministry of health has to approve all gene-therapy clinical trials in China, but these regulations appear relatively relaxed. According to the WSJ, at Hangzhou Cancer Hospital, for example, a proposal to test a cancer treatment that modifies patients’ immune cells was approved in a single afternoon. One member of the hospital’s approval committee told the WSJ that she did not really understand the science laid out for her in a 100-page document, but was told that the side effects were mild. This was enough for her to give it the go-ahead.
posted by chappell, ambrose at 8:40 AM on November 27, 2018 [3 favorites]
From that AP link, this is an American-educated and credentialed researcher, with the help of his white American mentor, doing completely unvetted high-risk biomedical experiments on Chinese babies. This is colonialism at its worst. The reason there has been no reporting on this beyond the claims of the 'scientists' involved is because this 'research' can not be reviewed/published as is, because it almost certainly violates the ethical ground rules of any reputable journal/funding agency. He should have his PhD rescinded by Rice University and his adviser Deem should also lose his job at Rice, and never get a penny of NIH funding again, period. Whether the treatment 'works' or not is irrelevant, that these procedures were carried out at all under the circumstances as described is abhorrent, and the careers of anyone involved should absolutely be shitcanned as a warning to any other researchers who get ideas about using foreign children as guinea pigs.
posted by aiglet at 8:53 AM on November 27, 2018 [16 favorites]
posted by aiglet at 8:53 AM on November 27, 2018 [16 favorites]
Blog post from Ewan Birney, director of the European Bioinformatics Institute:
One medical use of CRISPR is to edit the cells in a body, for example eye cells or muscle cells, and change those cells to fix a genetic defect. This is in some sense similar to the gene therapy discussions in the 1980s and 1990s. In addition, it is possible to edit embryos at the single cell stage (“the zygote”) to make a genetic change which is present in all cells of an individual.posted by kersplunk at 9:26 AM on November 27, 2018 [1 favorite]
In developed countries these sorts of procedures are usually regulated as part of In Vitro Fertilization (IVF), where sperm and eggs meet in a dish, and the resulting embryos are placed back into the mother. This procedure can help couples who are unable to conceive naturally.
In addition, in many countries, couples who are carriers of serious genetic diseases can have their embryos genetically screened at an early stage, whilst the embryos are still in a dish. The couples can choose to only have implanted those embryos that do not carry the genetic disease. This is called Pre-Implantation Genetic Diagnosis (PGD). These procedures, with strong national regulation, have been in place since the 1990s and many children have been safely conceived using this method.
The CRISPR approach would add an extra step of introducing CRISPR technology at the first cell stage. This would be followed by screening for a successful edit. Although this is technically possible, there are currently virtually no* serious genetic diseases where pre-implementation diagnosis would not work but CRISPR would.
Designer babies are gonna happen. You'll be able to tell when someone was born; "Oh, you're one of those 2052 kids-- green eyes, a widow's peak and freckles were totally in that year. Haha you're so yesterday."
posted by The otter lady at 10:46 AM on November 27, 2018 [4 favorites]
posted by The otter lady at 10:46 AM on November 27, 2018 [4 favorites]
Looks like I'm a 2052 baby!
posted by blurker at 11:19 AM on November 27, 2018 [1 favorite]
posted by blurker at 11:19 AM on November 27, 2018 [1 favorite]
Yikes, this story. It has filled the Chinese news media for several days now and people's reactions are overwhelmingly negative. People also found a lot of dirt on the lead researcher.
1, it's not even clear that he properly informed the twin's parents what exactly they were doing, the parents said that they were told it was something vague like 'immunization therapy'.
2, the research was conducted at a private hospital in the infamous 'Putian' 莆田 system. The big medical scandal that really put 莆田 on the map was an exposé on doctors there charging exorbitant prices for a 'miracle' cancer cure that led to a young cancer patient's hasty death.
3, the lead researcher He Jiankui is the founder of a venture called '瀚海基因生物科技有限公司' that wants to sell 'third generation technology' in DNA testing, and they bought the technology from a defunct US company Helicos BioSciences. (There's heavy suspicion that branching into gene editing was a marketing stunt that would make this DNA testing company more attractive to investors, but they didn't anticipate the backlash.)
4, in an international forum from a couple of years ago, He Jiankui himself expressed ethical concerns over using gene editing on humans in very clear terms.
I can't even.
posted by of strange foe at 11:27 AM on November 27, 2018 [13 favorites]
1, it's not even clear that he properly informed the twin's parents what exactly they were doing, the parents said that they were told it was something vague like 'immunization therapy'.
2, the research was conducted at a private hospital in the infamous 'Putian' 莆田 system. The big medical scandal that really put 莆田 on the map was an exposé on doctors there charging exorbitant prices for a 'miracle' cancer cure that led to a young cancer patient's hasty death.
3, the lead researcher He Jiankui is the founder of a venture called '瀚海基因生物科技有限公司' that wants to sell 'third generation technology' in DNA testing, and they bought the technology from a defunct US company Helicos BioSciences. (There's heavy suspicion that branching into gene editing was a marketing stunt that would make this DNA testing company more attractive to investors, but they didn't anticipate the backlash.)
4, in an international forum from a couple of years ago, He Jiankui himself expressed ethical concerns over using gene editing on humans in very clear terms.
I can't even.
posted by of strange foe at 11:27 AM on November 27, 2018 [13 favorites]
> Servo5678:
"So how bad is this on a scale of Khan Noonien Singh to Magneto?"
Magneto made some valid points, the T-Shirt.
posted by signal at 11:46 AM on November 27, 2018 [1 favorite]
"So how bad is this on a scale of Khan Noonien Singh to Magneto?"
Magneto made some valid points, the T-Shirt.
posted by signal at 11:46 AM on November 27, 2018 [1 favorite]
I want that shirt, but I'm pretty sure Magneto would flee screaming into the wind from this study for the same reasons that I get real uncomfortable when we start discussing the genetic basis of gay people, at least if we accept the maddening and absolutely nonsensical notion that a single known locus controls whether or not a given person will eventually manifest as a mutant.
or I mean, in some way try to destroy the study. imagine bioterrorism inflicted on the mutant community using a weaponized virus. House of M all over again.
posted by sciatrix at 11:57 AM on November 27, 2018
or I mean, in some way try to destroy the study. imagine bioterrorism inflicted on the mutant community using a weaponized virus. House of M all over again.
posted by sciatrix at 11:57 AM on November 27, 2018
Handmaid’s Tale is becoming reality, why not Oryx & Crake! Brave new world we’re in. Just beware the pigoons.
posted by misterpatrick at 12:24 PM on November 27, 2018 [1 favorite]
posted by misterpatrick at 12:24 PM on November 27, 2018 [1 favorite]
God, I could not read the prequel/sequel to Oryx & Crake because it all felt weirdly possible in the near future. I'm glad I read Margret Atwood during a more simple time.
posted by Hermeowne Grangepurr at 12:27 PM on November 27, 2018 [1 favorite]
posted by Hermeowne Grangepurr at 12:27 PM on November 27, 2018 [1 favorite]
For another instance of bioethics and regulation in China, in September Al Jazeera's 101 East had this: “China: Caging the Ocean's Wild” (~½-hour video) about China's public aquarium / marine park industry's treatment of animals... basically all the worst stuff seen in zoos and aquariums in the rest of the world at ten times the volume and a speed commensurate with the country's economic growth. Plus lots of exploitation of untrained human labor of course.
A dimension I've been thinking about relative to the concentration camps in Xinjiang and the “social credit” surveillance and social control system (another good, recent 101 East episode about that) is that, with compulsory genome sequencing for surveillance purposes, China must have very comprehensive databases of both the genetic information itself and corresponding medical and phenotype information.
posted by XMLicious at 12:54 PM on November 27, 2018 [1 favorite]
A dimension I've been thinking about relative to the concentration camps in Xinjiang and the “social credit” surveillance and social control system (another good, recent 101 East episode about that) is that, with compulsory genome sequencing for surveillance purposes, China must have very comprehensive databases of both the genetic information itself and corresponding medical and phenotype information.
posted by XMLicious at 12:54 PM on November 27, 2018 [1 favorite]
"The CRISPR babies. Is it a true story or a hoax? If true, its seems a do-it-yourself kind of experiment by a loner with a 'mission.' Here is are some remarkable facts about the 'science' behind the news..."
"I quite agree with @Noahpinion. People in the West will fret that this smacks of eugenics. And it sort of does. Yet if we fall behind guess who will be running the planet in the next century..."
also btw...
-If it's safe, then it's ethical
-The disease-fighting benefits are too great to ignore
-Up to 600 jobs to be created as Irish gene firm is sold as part of €350m Chinese deal
posted by kliuless at 2:00 PM on November 27, 2018
"I quite agree with @Noahpinion. People in the West will fret that this smacks of eugenics. And it sort of does. Yet if we fall behind guess who will be running the planet in the next century..."
also btw...
-If it's safe, then it's ethical
-The disease-fighting benefits are too great to ignore
-Up to 600 jobs to be created as Irish gene firm is sold as part of €350m Chinese deal
posted by kliuless at 2:00 PM on November 27, 2018
For another instance of bioethics and regulation in China, in September Al Jazeera's 101 East had this: “China: Caging the Ocean's Wild” (~½-hour video) about China's public aquarium / marine park industry's treatment of animals... basically all the worst stuff seen in zoos and aquariums in the rest of the world at ten times the volume and a speed commensurate with the country's economic growth. Plus lots of exploitation of untrained human labor of course.
I was once invited to the “Blue Zoo Beijing” aquarium. The two things I remember most vividly were 1) the aquarium was in a building built on stilts in a lake, accessible by a bridge, but the lake had dried up and all the fish were dying in shrinking pools under the bridge 2) the afternoon “mermaid show” involved a rather overweight elderly dude swimming around in a mermaid costume and using the sharks to pull him around the tank.
posted by chappell, ambrose at 2:06 PM on November 27, 2018 [3 favorites]
I was once invited to the “Blue Zoo Beijing” aquarium. The two things I remember most vividly were 1) the aquarium was in a building built on stilts in a lake, accessible by a bridge, but the lake had dried up and all the fish were dying in shrinking pools under the bridge 2) the afternoon “mermaid show” involved a rather overweight elderly dude swimming around in a mermaid costume and using the sharks to pull him around the tank.
posted by chappell, ambrose at 2:06 PM on November 27, 2018 [3 favorites]
even in the UK, prenatal screening for Down's syndrome, a disability that produces low to moderate intellectual disability. It's not easy to make a moral or philosophical case that the screening offered by Genomic Prediction for low IQ is any different.
I find this comparison really fucking stupid. There is a lot more to Down's Syndrome than low to moderate intellectual disability. There are a host of physical health issues including but not limited to epilepsy, vision and hearing problems, heart disease, increased risk of alzheimers and blood cancer and more.
It pisses me off to see Down's syndrome used as cheap point scoring in this debate.
posted by smoke at 2:10 PM on November 27, 2018 [4 favorites]
I find this comparison really fucking stupid. There is a lot more to Down's Syndrome than low to moderate intellectual disability. There are a host of physical health issues including but not limited to epilepsy, vision and hearing problems, heart disease, increased risk of alzheimers and blood cancer and more.
It pisses me off to see Down's syndrome used as cheap point scoring in this debate.
posted by smoke at 2:10 PM on November 27, 2018 [4 favorites]
Gene-splicing wildcatters are just what the human race needs right now eh
posted by Johnny Wallflower at 2:41 PM on November 27, 2018
posted by Johnny Wallflower at 2:41 PM on November 27, 2018
If you want to read something informed, rather than breathless doom mongering or hype making, as usual, In The Pipeline has you covered
posted by lalochezia at 3:07 PM on November 27, 2018 [2 favorites]
posted by lalochezia at 3:07 PM on November 27, 2018 [2 favorites]
at least if we accept the maddening and absolutely nonsensical notion that a single known locus controls whether or not a given person will eventually manifest as a mutant.
It's not nonsensical, it's the result of genetic tampering on ancient hominids by the Celestials during the First Host using technology so advanced that it's effectively magic. Makes perfect sense.
posted by Sangermaine at 3:08 PM on November 27, 2018 [1 favorite]
It's not nonsensical, it's the result of genetic tampering on ancient hominids by the Celestials during the First Host using technology so advanced that it's effectively magic. Makes perfect sense.
posted by Sangermaine at 3:08 PM on November 27, 2018 [1 favorite]
Some of this material (gene editing) is adjacent to my research interests, and some of it is directly in my wheelhouse (genomic prediction).
Many early studies with CRISPR trumpeted its precision and the absence of off-target effects. However, several recent studies have shown that there can be considerable off-target effects across the genome. These findings remind us that this technology is still very new and we’ve still got a lot to learn about it. There are some encouraging results with livestock, such as polled cattle and PRRS-resistant pigs, and Recombinetics is working to develop swine models of human disease that could be very valuable for research. We still need to do long-term studies to be sure there are no unintended consequences that show up as animals age, and to determine how offspring perform. This technology is exciting, and not at all ready for use in human embryos.
So, on to genomic prediction. Most of us probably recal Mendel’s peas, which he used to develop a model to describe the transmission of traits controlled by a single gene. Many congenital defects follow this model because they’re caused by a broken (absent, incomplete, or misformed) protein encoded by a single gene. However, many traits are controlled by a large number of genes, each with small effects (e.g., height, intelligence, milk production). For more than 100 years, scientists have been using mathematical and statistical models to predict the genetic merit of plants and animals. This information is used in genetic improvement programs, which have been very successful tools for increasing productivity (example: milk yield in dairy cows). Historically, these programs used records of individual performance in conjunction with pedigree information (VanRaden et al., 2017) and were extended to include DNA information about 10 years ago when it became possible to cheaply and rapidly genotype thousands of DNA markers at one time (Wiggans et al., 2017; disclaimer: I’m a co-author of this paper). This approach has been so powerful that we’ve doubled the rate of genetic gain in 10 years (García-Ruiz et al., 2016; disclaimer: I’m a co-author).
Once gene editing is a feasible technology, it’s not much of a stretch to think about increasing the frequency of desirable alleles in the population directly, rather than through selection alone (e.g., Janko et al., 2015). But, there’s one really important problem yet to overcome: what genes do we edit? Genomewide association studies are often used to identify DNA markers that explain variation in complex traits (e.g., Visscher et al., 2017), but many GWAS results can’t be replicated within the same population, much less in other populations. There are lots of reasons for this, largely due to the difference between a marker located in physical proximity to a causal variant and the variant itself. Think of mile-markers on the highway: you might know that your forgotten cell phone fell off your car’s roof between mile 2,112 and 2,113, but that’s still a lot of ground to search. There are some other important technical issues, but the important point is that we still don’t know what specific changes need to be made to an individual’s DNA to improve their intelligence. I remain very skeptical that it’s really possible to effectively change a human’s intelligence using gene editing at this time. It’s certainly possible to predict an embryo’s intelligence (I’m eliding a strict definition of intelligence here because it’s complicated) from its genotype, but the recent work by Lee et al. (2018) on educational attainment identified more than 1,200 markers with statistically significant and notes that effects are heterogeneous across environments.
I guess that’s a lot of words to say that editing a single locus is feasible with current technology, which I think is all the scientist in China claims to have done. We’re still a long way from being able to change lots of genes at one time, even if we knew what changes to make.
posted by wintermind at 4:50 PM on November 27, 2018 [18 favorites]
Many early studies with CRISPR trumpeted its precision and the absence of off-target effects. However, several recent studies have shown that there can be considerable off-target effects across the genome. These findings remind us that this technology is still very new and we’ve still got a lot to learn about it. There are some encouraging results with livestock, such as polled cattle and PRRS-resistant pigs, and Recombinetics is working to develop swine models of human disease that could be very valuable for research. We still need to do long-term studies to be sure there are no unintended consequences that show up as animals age, and to determine how offspring perform. This technology is exciting, and not at all ready for use in human embryos.
So, on to genomic prediction. Most of us probably recal Mendel’s peas, which he used to develop a model to describe the transmission of traits controlled by a single gene. Many congenital defects follow this model because they’re caused by a broken (absent, incomplete, or misformed) protein encoded by a single gene. However, many traits are controlled by a large number of genes, each with small effects (e.g., height, intelligence, milk production). For more than 100 years, scientists have been using mathematical and statistical models to predict the genetic merit of plants and animals. This information is used in genetic improvement programs, which have been very successful tools for increasing productivity (example: milk yield in dairy cows). Historically, these programs used records of individual performance in conjunction with pedigree information (VanRaden et al., 2017) and were extended to include DNA information about 10 years ago when it became possible to cheaply and rapidly genotype thousands of DNA markers at one time (Wiggans et al., 2017; disclaimer: I’m a co-author of this paper). This approach has been so powerful that we’ve doubled the rate of genetic gain in 10 years (García-Ruiz et al., 2016; disclaimer: I’m a co-author).
Once gene editing is a feasible technology, it’s not much of a stretch to think about increasing the frequency of desirable alleles in the population directly, rather than through selection alone (e.g., Janko et al., 2015). But, there’s one really important problem yet to overcome: what genes do we edit? Genomewide association studies are often used to identify DNA markers that explain variation in complex traits (e.g., Visscher et al., 2017), but many GWAS results can’t be replicated within the same population, much less in other populations. There are lots of reasons for this, largely due to the difference between a marker located in physical proximity to a causal variant and the variant itself. Think of mile-markers on the highway: you might know that your forgotten cell phone fell off your car’s roof between mile 2,112 and 2,113, but that’s still a lot of ground to search. There are some other important technical issues, but the important point is that we still don’t know what specific changes need to be made to an individual’s DNA to improve their intelligence. I remain very skeptical that it’s really possible to effectively change a human’s intelligence using gene editing at this time. It’s certainly possible to predict an embryo’s intelligence (I’m eliding a strict definition of intelligence here because it’s complicated) from its genotype, but the recent work by Lee et al. (2018) on educational attainment identified more than 1,200 markers with statistically significant and notes that effects are heterogeneous across environments.
I guess that’s a lot of words to say that editing a single locus is feasible with current technology, which I think is all the scientist in China claims to have done. We’re still a long way from being able to change lots of genes at one time, even if we knew what changes to make.
posted by wintermind at 4:50 PM on November 27, 2018 [18 favorites]
I can’t bring myself to be upset about “designer babies.” We have so little information at this point about the importance of nature vs nurture when it comes to DNA that it’s a bit of a tempest in a tea pot. You might try to design a super bowl winning quarterback but if that kid hates football, the whole process was pointless.
I have a feeling that we will eventually find out (it seems to be a pattern) that while DNA can provide you with a certain amount of leg up, after a certain point your successes are due to your opportunities and choices not your genes.
All the fancy DNA in the world also won’t help you if, for example, you are severely abused while growing up. Pretty sure there isn’t a gene for “shrugs off psychological damage.” I have no problem at all with trying to fix genes that pass on debilitating conditions.
I think it will be a very personal choice. Which means, in the US at least, that the super religious will scream about satan and jeebus and God’s will and do their best to ban it. I tend to automatically agree with whatever they have decided is “ungodly” because they are anti-science and anti-progress.
posted by monkeyscouch at 7:22 PM on November 27, 2018
I have a feeling that we will eventually find out (it seems to be a pattern) that while DNA can provide you with a certain amount of leg up, after a certain point your successes are due to your opportunities and choices not your genes.
All the fancy DNA in the world also won’t help you if, for example, you are severely abused while growing up. Pretty sure there isn’t a gene for “shrugs off psychological damage.” I have no problem at all with trying to fix genes that pass on debilitating conditions.
I think it will be a very personal choice. Which means, in the US at least, that the super religious will scream about satan and jeebus and God’s will and do their best to ban it. I tend to automatically agree with whatever they have decided is “ungodly” because they are anti-science and anti-progress.
posted by monkeyscouch at 7:22 PM on November 27, 2018
It's Dr Sugaiguntung from 'Stand On Zanzibar'
posted by ergomatic at 7:42 PM on November 27, 2018 [2 favorites]
posted by ergomatic at 7:42 PM on November 27, 2018 [2 favorites]
We're going to see the use of polygenic scores for embryo selection in IVF become frequent in the next decade for people who are already doing IVF for other reasons. The gains are much too marginal for anyone else because:
-PGS is statistical and we're not remotely close to understanding underlying mechanism, so no guarantee of any effect on a per couple basis
-Typical number of viable embryos per IVF round is single digits.
-Variance of PGS given identical parents is not that big
The second and third point together indicate together (based on an analysis I've seen) that the most you'd get from selecting the "best" of 10 viable embryos is a gain of... 3 IQ points on average. So even if you have 10 viable embryos, rank them by PGS, implant them in rank order one-by-one, and the first one implants correctly and is carried to term you basically get nothing.
If techniques for in-vitro maturation of follicles were to develop sufficiently and it became possible to produce hundreds of viable embryos then we might be in a very different place, especially because techniques developed to help women with fertility issues conceive might operate very differently if used by younger women who did not have underlying fertility issues.
Some investment banks have now started offering egg and embryo freezing as benefits for their employees. Expect that IVF + selection will be part of someone's benefit package within a decade.
I don't see the risk so much that 1%ers will use this to make super babies, their children already have enough of a headstart anyway, but rather that they use it to create better worker drones, capable of working longer hours while not demanding a living wage, long term contracts or much else.
"Our children already have enough advantages," said the upper-middle-class professional parent, fictionally.
The inheritors of great fortunes may not all bother with this, but the high-flyer professional couples who have a 10 column spreadsheet comparing local nurseries and primary schools before their first child is even born? Oh yes, they will.
posted by atrazine at 4:16 AM on November 28, 2018 [3 favorites]
-PGS is statistical and we're not remotely close to understanding underlying mechanism, so no guarantee of any effect on a per couple basis
-Typical number of viable embryos per IVF round is single digits.
-Variance of PGS given identical parents is not that big
The second and third point together indicate together (based on an analysis I've seen) that the most you'd get from selecting the "best" of 10 viable embryos is a gain of... 3 IQ points on average. So even if you have 10 viable embryos, rank them by PGS, implant them in rank order one-by-one, and the first one implants correctly and is carried to term you basically get nothing.
If techniques for in-vitro maturation of follicles were to develop sufficiently and it became possible to produce hundreds of viable embryos then we might be in a very different place, especially because techniques developed to help women with fertility issues conceive might operate very differently if used by younger women who did not have underlying fertility issues.
Some investment banks have now started offering egg and embryo freezing as benefits for their employees. Expect that IVF + selection will be part of someone's benefit package within a decade.
I don't see the risk so much that 1%ers will use this to make super babies, their children already have enough of a headstart anyway, but rather that they use it to create better worker drones, capable of working longer hours while not demanding a living wage, long term contracts or much else.
"Our children already have enough advantages," said the upper-middle-class professional parent, fictionally.
The inheritors of great fortunes may not all bother with this, but the high-flyer professional couples who have a 10 column spreadsheet comparing local nurseries and primary schools before their first child is even born? Oh yes, they will.
posted by atrazine at 4:16 AM on November 28, 2018 [3 favorites]
it's not even clear that he properly informed the twin's parents what exactly they were doing, the parents said that they were told it was something vague like 'immunization therapy'.This is the most horrifying thing to me. I do human subjects research asking people to look at graphs and then test them on the information. If I'm feeling fancy, I record where they look on the screen. And I take informed consent way more seriously than this asshole.
Those poor parents, and their children.
posted by nicodine at 8:24 AM on November 28, 2018
Thank you to wintermind for providing more CRISPR context. The genome is like any complex system, a change in one area can cause further effects down the road in other parts of the system in ways that are not currently predictable. Think dropping a pebble into a pond, except we don't know all the directions the ripples will spread out, how strong the ripples are, or how far the ripples will travel.
Intelligence is like a lot of traits, it is not only spread across an unknown number of unidentified genes but it is significantly affected by epigenetics (modifications to genes made after conception). Include muscular strength, compassion, what-have-you in there.
To put the complexity in context: if we possessed the understanding of the genome necessary to select for traits like intelligence, we wouldn't have cancer--or at least we'd know for sure how all cancers everywhere occurred. Which we don't.
We are so far from creating super-babies that frankly we're all going to be in a climate-change post-apocalyptic wasteland long before we know how they'd be formed, much less are able to do it. We'll all be too busy figuring out where we're going to get fresh water! So, uh, take some comfort in that?
posted by Anonymous at 9:21 AM on November 29, 2018
Intelligence is like a lot of traits, it is not only spread across an unknown number of unidentified genes but it is significantly affected by epigenetics (modifications to genes made after conception). Include muscular strength, compassion, what-have-you in there.
To put the complexity in context: if we possessed the understanding of the genome necessary to select for traits like intelligence, we wouldn't have cancer--or at least we'd know for sure how all cancers everywhere occurred. Which we don't.
We are so far from creating super-babies that frankly we're all going to be in a climate-change post-apocalyptic wasteland long before we know how they'd be formed, much less are able to do it. We'll all be too busy figuring out where we're going to get fresh water! So, uh, take some comfort in that?
posted by Anonymous at 9:21 AM on November 29, 2018
The CRISPR Baby Scandal Gets Worse by the Day (Ed Yong/The Atlantic)
The alleged creation of the world's first gene-edited infants was full of technical errors and ethical blunders. Here are the 15 most damning details.posted by ZeusHumms at 10:22 AM on December 4, 2018 [2 favorites]
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posted by signal at 5:43 AM on November 27, 2018 [3 favorites]