10 ms·

Jailed baby gene scientist ‘should be made responsible’ for the children

59 points by acqbu 5y ago

The_rationalist 5y ago
The martyrs of the future are often the demons of their time
- elliekelly 5y ago
  Conducting experiments on people without consent does not a martyr make.
  - Barrin92 5y ago
    embryos are not people. Unless everyone has suddenly turned into an enthusiastic pro-lifer it seems bizarre to me why destruction or termination of children with genetic defects is supposedly ethical, but trying to prevent them is not. By definition unborn children or infants cannot give consent. That has never been the basis for denying them medical treatment, including experimental ones. And in the entire history of medicine no established treatment exists without experimentation. If this is even remotely successful you may be looking at millions of lives saved by preventative HIV treatment in regions where the disease still kills millions. A 40 year old woman getting pregnant probably poses higher risks for their offspring than a lot of genetic experimentation. Is there any risk basis for these arguments or are people just apprehensive about gene-editing due to some naturalistic dogma? Just to think through this, people with Huntington's can, with a 50% chance, bring kids into the world who are doomed to basically die of a horrific disease, that's considered the personal right of parents. But the same parents couldn't subject some cells to treatment to attempt to prevent this, that's unethical?
    - sokoloff 5y ago
      I agree that embryos are not people. However, modifying the genome of an embryo that you intend and expect to become a human is modifying the genome of that human. Therefore, if it would be unethical to do it to the human, it’s unethical to do it to the embryo.
      - Barrin92 5y ago
        Why is modification of someone's genome unethical? If you could get gene editing right now to never contract HIV that would simply be a very effective medical treatment.
    - elliekelly 5y ago
      But the parents are humans and he didn’t get informed consent from them: > The scientist forged documents from an ethics review panel to recruit couples for the research
  - bpodgursky 5y ago
    Preserving the status quo doesn't make you a hero either. HIV resistance is optional, sure. What about conceiving a child with sickle cell anemia? Why is that more ethical than trying to give a child a healthier life? We do a lot of medical treatments on children without their consent. There are now (experimental!) open-heart surgeries of children in the womb. Is that unacceptable too?
    - krisoft 5y ago
      I’m not sure what you are arguing about. There is a process to decide if a medical procedure is ethical or not. It involves an ethics board where people who know much more about both ethics and the proposed procedure than the average HN commenter make a decision. If you feel this process did come up with bad decisions please elaborate. But the researcher in question didn’t bother to get a decision, just falsified one for himself. That doesn’t sound right, really.
      - quinnjh 5y ago
        In Hitler's Ethic Weikart helps unlock the mystery of Hitler's evil by vividly demonstrating the surprising conclusion that Hitler's immorality flowed from a coherent ethic. Hitler was inspired by evolutionary ethics to pursue the utopian project of biologically improving the human race. https://www.csustan.edu/history/hitlers-ethic https://www.csustan.edu/history/hitlers-ethic Further- if we use dynamical system theory and look at coastal engineering-when we apply a control (say a barrier wall or "groyne" at the beach, to retain the nice sand) mother nature with time will work around it (the sand is carried by the tide and waves to carve out of the beach and deposit on the back of the retaining wall) https://www.researchgate.net/figure/a-The-terminal-groyne-syndrome-occurring-in-Southwick-beach-in-West-Sussex-where-the_fig1_347353047/amp https://www.researchgate.net/figure/a-The-terminal-groyne-sy... Engineering nature properly requires a liberatory embrace of differentiation, diversity, and ultimately futility. The natSoc obsession with systemic perfection and crystallization leads somewhere predictable, and we rightly stamped the movement out (though many of the doctors worked w and moved to the US, and allies have had their share of eugenic fantasies and doctrines). We need to wake up from the childlike belief in the infallibility of scientism. As Richard Feynman put it: "Science is the belief in the ignorance of experts"
pyuser583 5y ago
As a thought experiment, how would this be handled in America? There would be a lawsuit. And probably a settlement. Beyond that, there wouldn’t be any effort to track these kids across their lives. And medical privacy would prevent any sort of public inquiry. Best case scenario would be a large lump sum payment to a committee of lawyers charged with monitoring the well being of the children. I don’t think charging the individuals and institutions that let this happen with “making it right” is a good idea. This crazy doctor should never be allowed to see these parents and kids again.
- bigtones 5y ago
  Conclusion of your thought experiment rings very true. An example of a similar result is the the case of the Turpin children.
theknocker 5y ago
aasasd 5y ago
Again, I have to lament that science curiosity in babies is cruelly punished, whereas it should be greatly encouraged.
JoeAltmaier 5y ago
Every parent does such experiments blindly and randomly, when they choose their 'soul mate'. Sure this guy was reckless and playing with lives. Like everybody who had children ever. Are the 'his' children? Not sure. Not sure he should even be in jail. Most parents don't go to jail. Even those that have a baby with genetic defects they knew about before birth, or even before conception because of genetic counseling.
- Gatsky 5y ago
  Not sure how you can actually write this comment without realising how silly it is. It makes no sense to compare normal human procreation, a process which has evolved over billions of years and has many remarkable features, to this completely unethical and frankly insane meddling in the lives of children.
- dekhn 5y ago
  Your first paragraph shows an extraordinary lack of understanding of the situation.
acqbu 5y ago
http://archive.today/2LOd5 http://archive.today/2LOd5
gleenn 5y ago
Pretty wild, especially also the implications of the children having their own children and passing the mutated genes. I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off?
- gwern 5y ago
  > Pretty wild, especially also the implications of the children having their own children and passing the mutated genes. The implications of your kids each having ~70 de novo mutations just in the course of normal reproduction, which mutated genes they will pass on to their own children, is also pretty interesting.
- donkarma 5y ago
  HIV is a pretty recent disease and the gene that was deactivated serves a useful purpose against West Nile
- zdragnar 5y ago
  I doubt that this gene "only" prevents HIV infection. The unintended consequences of activating that gene could be very diverse, and not fully expressed in any one child. Most adaptations have trade-offs, some quite severe (sickle cell anemia protecting against malaria, as an example).
- PragmaticPulp 5y ago
  > I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off? It’s a gene for a specific receptor that has certain other functions in the body. Certain strains of HIV just happen to use this receptor for viral entry, but it has other functions in the body. The specific CCR5 mutation has positive effects for resistance to certain HIV strains but actually worsens resistance to certain other diseases. There’s also a big question of how specific and accurate his editing actually was, of course.
- _3u10 5y ago
  The genes aren’t mutated, your genes are mutated as they carry an inferior mutation that lets you get aids.
deleted 5y ago
[deleted]
fabian2k 5y ago
Informing the children about the experiment is the very least they should do. And I think 18 is a bit too late, I probably would do it a bit earlier than that. Anything after that has to be their own choice, like it is for everyone else. This was just a completely reckless and unethical experiment, I hope it didn't cause serious damage to those kids.
- suifbwish 5y ago
  Ethics question: if those people could lead an otherwise happy and normal life not viewing themselves as some kind of an experiment wouldn’t it be immoral for someone to take that away from them?
- Maursault 5y ago
  > I hope it didn't cause serious damage to those kids. Me as well, but I also hope this doesn't turn out like the plot of Legend.
  - TheMightyLlama 5y ago
    And in addition to that, wary of my lack of knowledge in this area, will the change be passed down the generations?
    - systoll 5y ago
      Yes. That said, The change isn’t novel to humans. ~16% of Norwegians have it, though only 0.4% of Chinese people do.
- _3u10 5y ago
  How was it reckless or unethical? The kids are fine, they’re probably immune to aids. What’s the big deal?
  - splatzone 5y ago
    I believe there is a risk that they could be vulnerable to other diseases, like influenza. And maybe more unknown side effects Also - He forged ethics documents (he did not have his University’s approval) and had a coercive clause in the consent form which meant the patient would be liable for costs if they backed out
encryptluks2 5y ago
I mean this is messed up, but I've seen a lot more widespread abuse in the medical field that doctors and governments supported. Just look at what happened to Rosemary Kennedy. Where was the justice for children lobotomized? Or those used in government research?
- danuker 5y ago
  Stuff of nightmares.
- radicaldreamer 5y ago
  Not only in the past either, there are ongoing scams where elders are being preyed upon to inject stem cells into various organs (including where they end up blind etc.) They are entered into bogus "trails" as legal protection for these "doctors" and the clinic.
  - doctorhandshake 5y ago
    Big if true. Link?
    - radicaldreamer 5y ago
      https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-injections.html https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-in... Bunch of these clinics in Florida
      - doctorhandshake 5y ago
        Wow I had heard about this but somehow missed that they were framed as studies. Awful.
    - heavyset_go 5y ago
      https://www.fda.gov/consumers/consumer-updates/fda-warns-about-stem-cell-therapies https://www.fda.gov/consumers/consumer-updates/fda-warns-abo... https://rationalwiki.org/wiki/Stem_cell_research#Safety_and_efficacy https://rationalwiki.org/wiki/Stem_cell_research#Safety_and_...
verisimi 5y ago
[flagged]
- crummy 5y ago
  The link says no? Do you have a reliable source that says Pfizer's vaccine uses CRISPR?
  - bnjemian 5y ago
    The comment above by verisimi was factually incorrect. The Pfizer vaccine contains MRNA. MRNAs are short-lived nucleic acids (not DNA) that exert their function in the cytoplasm of the cell (not nucleus, where DNA lives and Cas9 exerts its' action) and are used to translate proteins. The proteins coded for by the MRNA sequences in vaccines (Pfizer, Moderna) code for the S1 spike protein, which occurs on the surface of the SARS-CoV-2. After their translation, these proteins are then recognized as foreign by the immune system of the host (i.e. person), leading to an immune response. There is no Cas9 enzyme in MRNA vaccines.
  - SirGiggles 5y ago
    TL;DR: The grandparent's source is a load of horseshit, and it seems evident an agenda is being pushed. The grandparent's source came from a person going by Manul Ashwadka [1]. I've added their comment in specific and as we can also see from the link that Manul's sources are from his own posted studies [2] (a guess based on the published initials on Zenodo) which from what I can gather is not peer reviewed. Further more, in an attempt to find out more about the author of the paper, the link to his/her/their blog as found on a hyperlink from Zenodo leading to ORCiD results in the following (now defunct) webpage: https://fight-against-gates-new-world-order.mozello.com/blog/ https://fight-against-gates-new-world-order.mozello.com/blog... [3]. With this avenue blocked, any publicly information we can find about Manul Ashwadka (whom I suspect is the same as M.A.) is their posts on Quora which essentially devolve into accusing Quora of censoring posts for disagreeing with the Biden administration, justifying the Russian Federation invasion of Ukraine, blaming Dr. Fauci for creating the pandemic, blaming the US for a variety of things, etc... [1] https://qr.ae/pGLEdZ https://qr.ae/pGLEdZ (a shortened URL leading to Quora) [2] https://zenodo.org/record/6210570#.YiJnV5XhRPz https://zenodo.org/record/6210570#.YiJnV5XhRPz [3] https://orcid.org/0000-0003-0048-882X https://orcid.org/0000-0003-0048-882X
jdrc 5y ago
Better to just monitor the kids for side effects of ccr5 deactivation . By the time they grow up gene editing will be common place so i dont think that s something to worry about.
PradeetPatel 5y ago
Is there a set of international guidelines around the ethics of human genome editing? If so, how are they enforced to ensure nations do not conduct unethical research & in experiments to further their own geopolitical goals?
- WheelsAtLarge 5y ago
  Enforcement is very difficult since anyone that wants to can start doing it. It's mind blowing but the tools and materials for genetic work are relatively inexpensive and are mostly unregulated. As far as know-how, it is not restricted either. The field mostly relies on good-will to make sure they do it ethically. Sure there are laws but they are only useful once some one is caught doing something wrong.
- verisimi 5y ago
  What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it?
  - a-dub 5y ago
    > What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it? no ethics committee would ever approve transgenic human embryo experiments. this also sounds really stupid. like there's no real science there, just a willingness to overstep ethical bounds in the pursuit of fame and fortune. meanwhile, it sounds like actual scientists are exploring crispr/cas9 approaches to curing hiv infected persons.
  - PradeetPatel 5y ago
    Seeing that I am not a certified professional in that domain. I would defer my judgement to a committee of experts.
    - quinnjh 5y ago
      This is how eugenics happens
Animats 5y ago
Why are people so upset about this? Somebody had to be the first to do gene editing on human DNA. I'm surprised Craig Venter hadn't done this already. Mandatory XKCD: https://imgs.xkcd.com/comics/old_timers.png https://imgs.xkcd.com/comics/old_timers.png
- Gatsky 5y ago
  First of all it wasn't necessary. Vertical transmission of HIV can be dealt with in other ways. Why expose these kids to pointless risk? No medical researcher with an ounce of integrity or care would do something like this. Secondly, it was fraud, the guy falsified documents and misrepresented things. Thirdly, the whole concept was dumb. It doesn't make any damn sense. He wanted to edit babies for his own reasons (some mix of insanity and ego I presume), so he found a way to do it. That xkcd is one of the worst ones I've seen, by the way, it also doesn't make any damn sense.
- dekhn 5y ago
  I had hoped to be the first person to do germline editing in a human (in the late 1980s, as a teenager, that was my goal). I spent about 20 years learning everything I could about human health and the relationship between the genome and visible phenotypes (from molecular to organismal). I concluded that while in principle, you could do germline editing ethically, the technology, and people's ethical maturity are both not at the point where we can do this. Also, if we did it, it would be a group effort not a single scientist acting rogue who didn't even get the details right.
- causality0 5y ago
  Yes, my thought exactly. A huge number of things are perfectly legal to do to children that are much, much worse than possibly screwing up an embryo while trying not to. You can get pregnant in your forties by a man in his seventies, drink and smoke while you're pregnant, and after giving birth have part of the child's genitals surgically removed and have their ears pierced. Why is trying to improve their genome where we draw the line?
  - fartcannon 5y ago

59 points by acqbu 5y ago

The_rationalist 5y ago

The martyrs of the future are often the demons of their time

elliekelly 5y ago
Conducting experiments on people without consent does not a martyr make.
- Barrin92 5y ago
  embryos are not people. Unless everyone has suddenly turned into an enthusiastic pro-lifer it seems bizarre to me why destruction or termination of children with genetic defects is supposedly ethical, but trying to prevent them is not. By definition unborn children or infants cannot give consent. That has never been the basis for denying them medical treatment, including experimental ones. And in the entire history of medicine no established treatment exists without experimentation. If this is even remotely successful you may be looking at millions of lives saved by preventative HIV treatment in regions where the disease still kills millions. A 40 year old woman getting pregnant probably poses higher risks for their offspring than a lot of genetic experimentation. Is there any risk basis for these arguments or are people just apprehensive about gene-editing due to some naturalistic dogma? Just to think through this, people with Huntington's can, with a 50% chance, bring kids into the world who are doomed to basically die of a horrific disease, that's considered the personal right of parents. But the same parents couldn't subject some cells to treatment to attempt to prevent this, that's unethical?
  - sokoloff 5y ago
    I agree that embryos are not people. However, modifying the genome of an embryo that you intend and expect to become a human is modifying the genome of that human. Therefore, if it would be unethical to do it to the human, it’s unethical to do it to the embryo.
    - Barrin92 5y ago
      Why is modification of someone's genome unethical? If you could get gene editing right now to never contract HIV that would simply be a very effective medical treatment.
  - elliekelly 5y ago
    But the parents are humans and he didn’t get informed consent from them: > The scientist forged documents from an ethics review panel to recruit couples for the research
- bpodgursky 5y ago
  Preserving the status quo doesn't make you a hero either. HIV resistance is optional, sure. What about conceiving a child with sickle cell anemia? Why is that more ethical than trying to give a child a healthier life? We do a lot of medical treatments on children without their consent. There are now (experimental!) open-heart surgeries of children in the womb. Is that unacceptable too?
  - krisoft 5y ago
    I’m not sure what you are arguing about. There is a process to decide if a medical procedure is ethical or not. It involves an ethics board where people who know much more about both ethics and the proposed procedure than the average HN commenter make a decision. If you feel this process did come up with bad decisions please elaborate. But the researcher in question didn’t bother to get a decision, just falsified one for himself. That doesn’t sound right, really.
    - quinnjh 5y ago
      In Hitler's Ethic Weikart helps unlock the mystery of Hitler's evil by vividly demonstrating the surprising conclusion that Hitler's immorality flowed from a coherent ethic. Hitler was inspired by evolutionary ethics to pursue the utopian project of biologically improving the human race. https://www.csustan.edu/history/hitlers-ethic https://www.csustan.edu/history/hitlers-ethic Further- if we use dynamical system theory and look at coastal engineering-when we apply a control (say a barrier wall or "groyne" at the beach, to retain the nice sand) mother nature with time will work around it (the sand is carried by the tide and waves to carve out of the beach and deposit on the back of the retaining wall) https://www.researchgate.net/figure/a-The-terminal-groyne-syndrome-occurring-in-Southwick-beach-in-West-Sussex-where-the_fig1_347353047/amp https://www.researchgate.net/figure/a-The-terminal-groyne-sy... Engineering nature properly requires a liberatory embrace of differentiation, diversity, and ultimately futility. The natSoc obsession with systemic perfection and crystallization leads somewhere predictable, and we rightly stamped the movement out (though many of the doctors worked w and moved to the US, and allies have had their share of eugenic fantasies and doctrines). We need to wake up from the childlike belief in the infallibility of scientism. As Richard Feynman put it: "Science is the belief in the ignorance of experts"

pyuser583 5y ago

As a thought experiment, how would this be handled in America? There would be a lawsuit. And probably a settlement. Beyond that, there wouldn’t be any effort to track these kids across their lives. And medical privacy would prevent any sort of public inquiry. Best case scenario would be a large lump sum payment to a committee of lawyers charged with monitoring the well being of the children. I don’t think charging the individuals and institutions that let this happen with “making it right” is a good idea. This crazy doctor should never be allowed to see these parents and kids again.

bigtones 5y ago
Conclusion of your thought experiment rings very true. An example of a similar result is the the case of the Turpin children.

theknocker 5y ago

aasasd 5y ago

Again, I have to lament that science curiosity in babies is cruelly punished, whereas it should be greatly encouraged.

JoeAltmaier 5y ago

Every parent does such experiments blindly and randomly, when they choose their 'soul mate'. Sure this guy was reckless and playing with lives. Like everybody who had children ever. Are the 'his' children? Not sure. Not sure he should even be in jail. Most parents don't go to jail. Even those that have a baby with genetic defects they knew about before birth, or even before conception because of genetic counseling.

Gatsky 5y ago
Not sure how you can actually write this comment without realising how silly it is. It makes no sense to compare normal human procreation, a process which has evolved over billions of years and has many remarkable features, to this completely unethical and frankly insane meddling in the lives of children.
dekhn 5y ago
Your first paragraph shows an extraordinary lack of understanding of the situation.

acqbu 5y ago

http://archive.today/2LOd5 http://archive.today/2LOd5

gleenn 5y ago

Pretty wild, especially also the implications of the children having their own children and passing the mutated genes. I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off?

gwern 5y ago
> Pretty wild, especially also the implications of the children having their own children and passing the mutated genes. The implications of your kids each having ~70 de novo mutations just in the course of normal reproduction, which mutated genes they will pass on to their own children, is also pretty interesting.
donkarma 5y ago
HIV is a pretty recent disease and the gene that was deactivated serves a useful purpose against West Nile
zdragnar 5y ago
I doubt that this gene "only" prevents HIV infection. The unintended consequences of activating that gene could be very diverse, and not fully expressed in any one child. Most adaptations have trade-offs, some quite severe (sickle cell anemia protecting against malaria, as an example).
PragmaticPulp 5y ago
> I wonder also why there is a deactivated gene that prevents HIV infection... did we have this ability for a long time but it fell out of use and was selected off? It’s a gene for a specific receptor that has certain other functions in the body. Certain strains of HIV just happen to use this receptor for viral entry, but it has other functions in the body. The specific CCR5 mutation has positive effects for resistance to certain HIV strains but actually worsens resistance to certain other diseases. There’s also a big question of how specific and accurate his editing actually was, of course.
_3u10 5y ago
The genes aren’t mutated, your genes are mutated as they carry an inferior mutation that lets you get aids.

deleted 5y ago

[deleted]

fabian2k 5y ago

Informing the children about the experiment is the very least they should do. And I think 18 is a bit too late, I probably would do it a bit earlier than that. Anything after that has to be their own choice, like it is for everyone else. This was just a completely reckless and unethical experiment, I hope it didn't cause serious damage to those kids.

suifbwish 5y ago
Ethics question: if those people could lead an otherwise happy and normal life not viewing themselves as some kind of an experiment wouldn’t it be immoral for someone to take that away from them?
Maursault 5y ago
> I hope it didn't cause serious damage to those kids. Me as well, but I also hope this doesn't turn out like the plot of Legend.
- TheMightyLlama 5y ago
  And in addition to that, wary of my lack of knowledge in this area, will the change be passed down the generations?
  - systoll 5y ago
    Yes. That said, The change isn’t novel to humans. ~16% of Norwegians have it, though only 0.4% of Chinese people do.
_3u10 5y ago
How was it reckless or unethical? The kids are fine, they’re probably immune to aids. What’s the big deal?
- splatzone 5y ago
  I believe there is a risk that they could be vulnerable to other diseases, like influenza. And maybe more unknown side effects Also - He forged ethics documents (he did not have his University’s approval) and had a coercive clause in the consent form which meant the patient would be liable for costs if they backed out

encryptluks2 5y ago

I mean this is messed up, but I've seen a lot more widespread abuse in the medical field that doctors and governments supported. Just look at what happened to Rosemary Kennedy. Where was the justice for children lobotomized? Or those used in government research?

danuker 5y ago
Stuff of nightmares.
radicaldreamer 5y ago
Not only in the past either, there are ongoing scams where elders are being preyed upon to inject stem cells into various organs (including where they end up blind etc.) They are entered into bogus "trails" as legal protection for these "doctors" and the clinic.
- doctorhandshake 5y ago
  Big if true. Link?
  - radicaldreamer 5y ago
    https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-injections.html https://www.nytimes.com/2017/03/15/health/eyes-stem-cells-in... Bunch of these clinics in Florida
    - doctorhandshake 5y ago
      Wow I had heard about this but somehow missed that they were framed as studies. Awful.
  - heavyset_go 5y ago
    https://www.fda.gov/consumers/consumer-updates/fda-warns-about-stem-cell-therapies https://www.fda.gov/consumers/consumer-updates/fda-warns-abo... https://rationalwiki.org/wiki/Stem_cell_research#Safety_and_efficacy https://rationalwiki.org/wiki/Stem_cell_research#Safety_and_...

verisimi 5y ago

[flagged]

crummy 5y ago
The link says no? Do you have a reliable source that says Pfizer's vaccine uses CRISPR?
- bnjemian 5y ago
  The comment above by verisimi was factually incorrect. The Pfizer vaccine contains MRNA. MRNAs are short-lived nucleic acids (not DNA) that exert their function in the cytoplasm of the cell (not nucleus, where DNA lives and Cas9 exerts its' action) and are used to translate proteins. The proteins coded for by the MRNA sequences in vaccines (Pfizer, Moderna) code for the S1 spike protein, which occurs on the surface of the SARS-CoV-2. After their translation, these proteins are then recognized as foreign by the immune system of the host (i.e. person), leading to an immune response. There is no Cas9 enzyme in MRNA vaccines.
- SirGiggles 5y ago
  TL;DR: The grandparent's source is a load of horseshit, and it seems evident an agenda is being pushed. The grandparent's source came from a person going by Manul Ashwadka [1]. I've added their comment in specific and as we can also see from the link that Manul's sources are from his own posted studies [2] (a guess based on the published initials on Zenodo) which from what I can gather is not peer reviewed. Further more, in an attempt to find out more about the author of the paper, the link to his/her/their blog as found on a hyperlink from Zenodo leading to ORCiD results in the following (now defunct) webpage: https://fight-against-gates-new-world-order.mozello.com/blog/ https://fight-against-gates-new-world-order.mozello.com/blog... [3]. With this avenue blocked, any publicly information we can find about Manul Ashwadka (whom I suspect is the same as M.A.) is their posts on Quora which essentially devolve into accusing Quora of censoring posts for disagreeing with the Biden administration, justifying the Russian Federation invasion of Ukraine, blaming Dr. Fauci for creating the pandemic, blaming the US for a variety of things, etc... [1] https://qr.ae/pGLEdZ https://qr.ae/pGLEdZ (a shortened URL leading to Quora) [2] https://zenodo.org/record/6210570#.YiJnV5XhRPz https://zenodo.org/record/6210570#.YiJnV5XhRPz [3] https://orcid.org/0000-0003-0048-882X https://orcid.org/0000-0003-0048-882X

jdrc 5y ago

Better to just monitor the kids for side effects of ccr5 deactivation . By the time they grow up gene editing will be common place so i dont think that s something to worry about.

PradeetPatel 5y ago

Is there a set of international guidelines around the ethics of human genome editing? If so, how are they enforced to ensure nations do not conduct unethical research & in experiments to further their own geopolitical goals?

WheelsAtLarge 5y ago
Enforcement is very difficult since anyone that wants to can start doing it. It's mind blowing but the tools and materials for genetic work are relatively inexpensive and are mostly unregulated. As far as know-how, it is not restricted either. The field mostly relies on good-will to make sure they do it ethically. Sure there are laws but they are only useful once some one is caught doing something wrong.
verisimi 5y ago
What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it?
- a-dub 5y ago
  > What are your ethics around human genome editing? Do you think its ok? If an ethics committee said it was ok, would that make a difference to how you evaluated it? no ethics committee would ever approve transgenic human embryo experiments. this also sounds really stupid. like there's no real science there, just a willingness to overstep ethical bounds in the pursuit of fame and fortune. meanwhile, it sounds like actual scientists are exploring crispr/cas9 approaches to curing hiv infected persons.
- PradeetPatel 5y ago
  Seeing that I am not a certified professional in that domain. I would defer my judgement to a committee of experts.
  - quinnjh 5y ago
    This is how eugenics happens

Animats 5y ago

Why are people so upset about this? Somebody had to be the first to do gene editing on human DNA. I'm surprised Craig Venter hadn't done this already. Mandatory XKCD: https://imgs.xkcd.com/comics/old_timers.png https://imgs.xkcd.com/comics/old_timers.png

Gatsky 5y ago
First of all it wasn't necessary. Vertical transmission of HIV can be dealt with in other ways. Why expose these kids to pointless risk? No medical researcher with an ounce of integrity or care would do something like this. Secondly, it was fraud, the guy falsified documents and misrepresented things. Thirdly, the whole concept was dumb. It doesn't make any damn sense. He wanted to edit babies for his own reasons (some mix of insanity and ego I presume), so he found a way to do it. That xkcd is one of the worst ones I've seen, by the way, it also doesn't make any damn sense.
dekhn 5y ago
I had hoped to be the first person to do germline editing in a human (in the late 1980s, as a teenager, that was my goal). I spent about 20 years learning everything I could about human health and the relationship between the genome and visible phenotypes (from molecular to organismal). I concluded that while in principle, you could do germline editing ethically, the technology, and people's ethical maturity are both not at the point where we can do this. Also, if we did it, it would be a group effort not a single scientist acting rogue who didn't even get the details right.
causality0 5y ago
Yes, my thought exactly. A huge number of things are perfectly legal to do to children that are much, much worse than possibly screwing up an embryo while trying not to. You can get pregnant in your forties by a man in his seventies, drink and smoke while you're pregnant, and after giving birth have part of the child's genitals surgically removed and have their ears pierced. Why is trying to improve their genome where we draw the line?
- fartcannon 5y ago