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Judging from 14 and 15, the gross irresponsibility here is masking a tension in the scientific community: Should gene-edited babies be a scientific goal, and i

Judging from 14 and 15, the gross irresponsibility here is masking a tension in the scientific community: Should gene-edited babies be a scientific goal, and if so how should risks be reduced? (Or, alternately, are they inevitable and how should risks be reduced?)

jillesvangurp 8y ago
People making a big stink out of ethical concerns virtually ensure that this stuff is going to happen first in a place with the least concern for ethics. China seems to be where the action is on this front. People worry about designer babies or baby hitlers (to name a few of the cliches). In reality people are trying to fix serious genetic defects and the science to do that in a responsible way is kind of near impossible to conduct in most reputable universities because of ethics. So, it's happening in a much less responsible way elsewhere by people who want to cash in on the obvious demand for any kind of snake oil or real solutions in this space.
- IfOnlyYouKnew 8y ago
  Nobody is worried about baby hitlers. As to your other points: Avoiding genetic risks is easily doable with technology that (for that very reason) is generally accepted, such as in-vitro genetic testing for risks, or prenatal screening with the option of abortion. There is opposition to that technology still, which goes to show that the approach you're advocating is actually the status quo. It's not like reproductive medicine has been standing still. Beyond that, I don't see how western democracy embarking on such designer baby experiments would change anything, except for just doing the evil deed ourselves: If we decide something is unethical, having moved the line would not stop others from going further still, at least within the frame of your argument.
  - adwn 8y ago
    > Avoiding genetic risks is easily doable with technology that (for that very reason) is generally accepted, such as in-vitro genetic testing for risks, or prenatal screening with the option of abortion. Woah. I'm not opposed to abortions, but suggesting that killing a future human being due to a gene defect is ethically superior to fixing that defect is beyond comprehension to me. That's on the same level of twisted priorities as Jehovah's Witnesses that would rather let their child die than allow a blood transfusion. At some point you need to take a step back and ask yourself, what is more important: Clinging to some very abstract ethical values, or saving the life of a human being.
    - IfOnlyYouKnew 8y ago
      There are no “abstract ethical values”, and the reasoning why GMO-babies are considered unethical are well-documented in this threat, I’m not going to try to discuss the ethics of abortion from first principle here because it would just end in wasted time without barely scratching the surface of what you can easily find on Wikipedia.
      - adwn 8y ago
        > reasoning why GMO-babies are considered unethical are well-documented in this threat I don't dispute that genetic engineering on humans is ethically controversial, that's not the point. The point is that you're saying that it's more ethical to kill a developing human being than to fix its gene defects. One of those options bears abstract, vague risks which may or may not come true, while the other option has a concrete, 100%-certain outcome, which is the death of a human [1]. [1] Again, I'm not arguing against abortion here.
        arbitrary_name 8y ago
        Ok, but consider the case in aggregate. The first case, or abortion case, is ethically dubious. But consider if this technology takes off and is poorly regulated and done badly. The aggregate consequences to me are worse than the first case. I'd rather cull a few elephants than try to bio engineer elephants to survive environmental catastrophes, with the possible broad reaching and irreversible consequences on the wider elephant gene pool and environment. Not saying abortion in case of genetic defect is a light issue, but I'd rather the cure not be worse than the disease.
- rtkwe 8y ago
  > People making a big stink out of ethical concerns virtually ensure that this stuff is going to happen first in a place with the least concern for ethics. China seems to be where the action is on this front. What's the alternative, because this is a big deal. Even if we ignore where this is going eventually which will be designer babies there's still the issue that when you run this experiment you're creating a person with a permanently altered genome, in many cases that edit will be heritable and there's no way we know of to fix this other than in embryos so if it goes wrong the best that can be offered is palliative care. Simply because other places will be unethical isn't a reason to lower the ethical bar in places with standards.
  - jillesvangurp 8y ago
    Assume it will happen eventually and act accordingly to ensure that happens under reasonable circumstances instead of just blanket forbidding everything until somebody changes the status quo anyway. It just delays the inevitable; it doesn't prevent it and it ensures somebody else gets the glory, technology and benefits. IMHO cloning or gene modifications are not inherently scary but doing that in a way that has a high failure rate probably is bonafide scary. The scandal is not that people are doing this but they are doing it poorly. When the result is healthy individuals things are great. But otherwise things are not so great when the result is lots of late stage abortions, still born babies, or children with all sorts of unforeseen genetic defects and issues. So, I'd prefer this to happen in modern research institute under reasonable conditions where progress is possible instead of being forbidden and taboo for decades. Even stuff like stemcell research is highly controversial still, not because of the above but of all sorts of ethical cliches about baby hitlers, designer babies, etc. So, we're not doing all sorts of research that could contribute to curing common defects on the off chance that somebody reenacts the Boys of Brazil or somebody's religious believes or might be confronted with the notion that this Darwin dude might have been on to something after all.
    - rtkwe 8y ago
      > Assume it will happen eventually and act accordingly to ensure that happens under reasonable circumstances instead of just blanket forbidding everything That's kind of what's happening. We're studying it thoroughly in animal models because we still don't know that we can do this reliably and safely there first. Just because we're not ready to allow human testing doesn't mean progress will get frozen.
jerf 8y ago
Designer babies are inevitable. From a sheer evolutionary perspective, the group willing to use a successful design mechanism is going to beat out the one that is not over the course of a few generations. However, the problem here is that we do not currently have the ability to create designer babies. We have a few clumsy tools that resemble the tools we'd actually need to do it, but in much the same way that a butcher's knife resembles a scalpel. It's an improvement over the era where what we had was a jackhammer, but it's still not suitable for the task. Any attempt to get serious about human germ-line editing with the current toolset isn't going to work. That means, there is very little likelihood of successful, happy outcomes, and a lot of room for unhappy, dangerous, or deadly outcomes. Before people seriously start trying this, we need to tip that balance to a point where it's at least interesting to discuss. An ethical discussion would have to revolve around costs and benefits, and it's a really easy discussion when it's basically all costs and no benefits. We don't need to invoke any particular philosophy or argue about utilitarianism or the virtues of deontology or what we should be deontological about in that scenario. So while I don't have a complete answer, one step to the "risk reduction" you ask for is that we still need better tooling so we're not trying to do the equivalent of performing brain surgery with a butcher's knife, before there's even anything all that interesting to discuss. We should have those discussions sooner rather than later, but as the article alludes to, "we" collectively actually have. (The fact we have no ability to enforce that discussion is a problem of some sort, though.) At least human germ-line experimentation isn't infectious, though.
- maxerickson 8y ago
  At least until someone decides to use a gene drive to do it.
  - jerf 8y ago
    Assuming you're referring to my comment about it not being infectious, gene drives (based on my quick reading about them :) ) are still not what I'd call infectious. But they can get you into a rather nasty long-term scenario where in order to produce a viable baby, the only option is to continue to use gene engineering techniques because all "natural" conceptions will be non-viable because of previous edits and gene drives and such. I've seen some variants of this idea in "the literature" (i.e., science fiction), but perhaps nothing quite as stark as that. Most of "the literature" tends to assume that even in a heavily gene-gineered world, if you just stop engineering, something viable will still survive.
brownbat 8y ago
Something I've thought about throughout the day is karyomapping, which has been repeatedly successfully used to screen out heritable diseases, but absent from this conversation... The discussion in the news could really benefit from reminding people what techniques we are currently using, to make it clear how this technique increased risk without advancing outcomes, and to make it clear that the objections aren't simply against all genetic tech.

jillesvangurp 8y ago

People making a big stink out of ethical concerns virtually ensure that this stuff is going to happen first in a place with the least concern for ethics. China seems to be where the action is on this front. People worry about designer babies or baby hitlers (to name a few of the cliches). In reality people are trying to fix serious genetic defects and the science to do that in a responsible way is kind of near impossible to conduct in most reputable universities because of ethics. So, it's happening in a much less responsible way elsewhere by people who want to cash in on the obvious demand for any kind of snake oil or real solutions in this space.

IfOnlyYouKnew 8y ago
Nobody is worried about baby hitlers. As to your other points: Avoiding genetic risks is easily doable with technology that (for that very reason) is generally accepted, such as in-vitro genetic testing for risks, or prenatal screening with the option of abortion. There is opposition to that technology still, which goes to show that the approach you're advocating is actually the status quo. It's not like reproductive medicine has been standing still. Beyond that, I don't see how western democracy embarking on such designer baby experiments would change anything, except for just doing the evil deed ourselves: If we decide something is unethical, having moved the line would not stop others from going further still, at least within the frame of your argument.
- adwn 8y ago
  > Avoiding genetic risks is easily doable with technology that (for that very reason) is generally accepted, such as in-vitro genetic testing for risks, or prenatal screening with the option of abortion. Woah. I'm not opposed to abortions, but suggesting that killing a future human being due to a gene defect is ethically superior to fixing that defect is beyond comprehension to me. That's on the same level of twisted priorities as Jehovah's Witnesses that would rather let their child die than allow a blood transfusion. At some point you need to take a step back and ask yourself, what is more important: Clinging to some very abstract ethical values, or saving the life of a human being.
  - IfOnlyYouKnew 8y ago
    There are no “abstract ethical values”, and the reasoning why GMO-babies are considered unethical are well-documented in this threat, I’m not going to try to discuss the ethics of abortion from first principle here because it would just end in wasted time without barely scratching the surface of what you can easily find on Wikipedia.
    - adwn 8y ago
      > reasoning why GMO-babies are considered unethical are well-documented in this threat I don't dispute that genetic engineering on humans is ethically controversial, that's not the point. The point is that you're saying that it's more ethical to kill a developing human being than to fix its gene defects. One of those options bears abstract, vague risks which may or may not come true, while the other option has a concrete, 100%-certain outcome, which is the death of a human [1]. [1] Again, I'm not arguing against abortion here.
      - arbitrary_name 8y ago
        Ok, but consider the case in aggregate. The first case, or abortion case, is ethically dubious. But consider if this technology takes off and is poorly regulated and done badly. The aggregate consequences to me are worse than the first case. I'd rather cull a few elephants than try to bio engineer elephants to survive environmental catastrophes, with the possible broad reaching and irreversible consequences on the wider elephant gene pool and environment. Not saying abortion in case of genetic defect is a light issue, but I'd rather the cure not be worse than the disease.
rtkwe 8y ago
> People making a big stink out of ethical concerns virtually ensure that this stuff is going to happen first in a place with the least concern for ethics. China seems to be where the action is on this front. What's the alternative, because this is a big deal. Even if we ignore where this is going eventually which will be designer babies there's still the issue that when you run this experiment you're creating a person with a permanently altered genome, in many cases that edit will be heritable and there's no way we know of to fix this other than in embryos so if it goes wrong the best that can be offered is palliative care. Simply because other places will be unethical isn't a reason to lower the ethical bar in places with standards.
- jillesvangurp 8y ago
  Assume it will happen eventually and act accordingly to ensure that happens under reasonable circumstances instead of just blanket forbidding everything until somebody changes the status quo anyway. It just delays the inevitable; it doesn't prevent it and it ensures somebody else gets the glory, technology and benefits. IMHO cloning or gene modifications are not inherently scary but doing that in a way that has a high failure rate probably is bonafide scary. The scandal is not that people are doing this but they are doing it poorly. When the result is healthy individuals things are great. But otherwise things are not so great when the result is lots of late stage abortions, still born babies, or children with all sorts of unforeseen genetic defects and issues. So, I'd prefer this to happen in modern research institute under reasonable conditions where progress is possible instead of being forbidden and taboo for decades. Even stuff like stemcell research is highly controversial still, not because of the above but of all sorts of ethical cliches about baby hitlers, designer babies, etc. So, we're not doing all sorts of research that could contribute to curing common defects on the off chance that somebody reenacts the Boys of Brazil or somebody's religious believes or might be confronted with the notion that this Darwin dude might have been on to something after all.
  - rtkwe 8y ago
    > Assume it will happen eventually and act accordingly to ensure that happens under reasonable circumstances instead of just blanket forbidding everything That's kind of what's happening. We're studying it thoroughly in animal models because we still don't know that we can do this reliably and safely there first. Just because we're not ready to allow human testing doesn't mean progress will get frozen.

jerf 8y ago

Designer babies are inevitable. From a sheer evolutionary perspective, the group willing to use a successful design mechanism is going to beat out the one that is not over the course of a few generations. However, the problem here is that we do not currently have the ability to create designer babies. We have a few clumsy tools that resemble the tools we'd actually need to do it, but in much the same way that a butcher's knife resembles a scalpel. It's an improvement over the era where what we had was a jackhammer, but it's still not suitable for the task. Any attempt to get serious about human germ-line editing with the current toolset isn't going to work. That means, there is very little likelihood of successful, happy outcomes, and a lot of room for unhappy, dangerous, or deadly outcomes. Before people seriously start trying this, we need to tip that balance to a point where it's at least interesting to discuss. An ethical discussion would have to revolve around costs and benefits, and it's a really easy discussion when it's basically all costs and no benefits. We don't need to invoke any particular philosophy or argue about utilitarianism or the virtues of deontology or what we should be deontological about in that scenario. So while I don't have a complete answer, one step to the "risk reduction" you ask for is that we still need better tooling so we're not trying to do the equivalent of performing brain surgery with a butcher's knife, before there's even anything all that interesting to discuss. We should have those discussions sooner rather than later, but as the article alludes to, "we" collectively actually have. (The fact we have no ability to enforce that discussion is a problem of some sort, though.) At least human germ-line experimentation isn't infectious, though.

maxerickson 8y ago
At least until someone decides to use a gene drive to do it.
- jerf 8y ago
  Assuming you're referring to my comment about it not being infectious, gene drives (based on my quick reading about them :) ) are still not what I'd call infectious. But they can get you into a rather nasty long-term scenario where in order to produce a viable baby, the only option is to continue to use gene engineering techniques because all "natural" conceptions will be non-viable because of previous edits and gene drives and such. I've seen some variants of this idea in "the literature" (i.e., science fiction), but perhaps nothing quite as stark as that. Most of "the literature" tends to assume that even in a heavily gene-gineered world, if you just stop engineering, something viable will still survive.

brownbat 8y ago

Something I've thought about throughout the day is karyomapping, which has been repeatedly successfully used to screen out heritable diseases, but absent from this conversation... The discussion in the news could really benefit from reminding people what techniques we are currently using, to make it clear how this technique increased risk without advancing outcomes, and to make it clear that the objections aren't simply against all genetic tech.