The ‘circle of trust’ behind the world’s first gene-edited babies
sciencemag.org
sciencemag.org
I read the article (albeit quickly as I'm on lunch break), but I can't find anything reporting on whether or not the experiment resulted in healthy children, or if they are immune to HIV (if that can be tested without infecting them, of course - I don't know anything about immunity detection either).
For reporting on the experiment itself, see one of the linked articles [1] which does not end on a hopeful note:
> [T]he editing of CCR5 in Lulu and Nana could have no detectable consequences at all. With no one providing updates on the health of the children, that outcome, perhaps the most likely one, may never be headline news.
[1] https://www.sciencemag.org/news/2019/08/did-crispr-help-or-h...
Technically, there should've been phase 1 trials. How do you propose to do that otherwise with genetic modification of germline cells otherwise?
Someone will have to be risked, like with any unproven treatments.
Either you can ban human modification on shaky grounds (not really ethics), or you will have to take that risk to just see if modification can take. There is no third way, no amount of animal studies proves the technique works in humans.
You could test it on embryos, but then you have to either kill them or are back in the same place. And it does not provide complete information - only about relatively early development.
How are you going to get consent from a human that isn't even conceived yet?
Wouldn’t it be better to simply not have a child?
Not having, say, HIV resistance could be considered a failure of nature, a deficit.
We're not talking about frivolous modifications for no reason here.
You might as well be asking when did any two parents get consent to produce their child with the specific DNA that child has (say in a situation where both parents are at risk to genetic defects).
Many people only believe that one until you use it to justify things other than abortion. For example the mother can get weird permanent cosmetic body modifications done to her (like, I don't know, getting a finger taken off), but the popular support would probably not be in favor of allowing the mother to get them done to her child in the womb. The best way I can explain what the popular opinion seems to be is as non-existence being neutral, as opposed to unnecessarily messed-up existence which is seen as bad.
This doesn't square with utilitarianism where the difference between 0 and 5 is the same as the difference between -5 and 0, but then again it's not like most people's opinions square with utilitarianism.
Parents make many, many decisions that will shape their child's future. Maybe editing an embryo is just one more. How is that different than choosing to feed your baby formula, put them in front of a TV all day, or drinking/smoking while pregnant (neither of which is illegal)?
This is the essence of the law: figuring out what happens when various rights intersect. I don't think there are right answers here but I think we need to generate some precedent in this area, and quick.
I'm not sure about the exact philosophical mechanics required to transfer rights from the future to the present (or however you want to phrase it) but parents should not be drinking during pregnancy; and it's for their future child's sake that they shouldn't.
Foolishly subjecting your child to an unproven genetic therapy could ruin their future to an extent closer to the mob example than the TV example.
Not editing in this case could be construed as future child abuse or even murder.
As a note, chances of a child given the therapy, if it's randomly working, are no different than general population, most likely. And if they're better, there goes this argument.
Fearing known unknowns more than unknown unknowns is not logical. Of course people do it all the time. Why does nature get to play the dice but we cannot?
That's not true - the average gene is more likely to be working than not, and the average mutation is more likely to break something, if it changes anything, than not.
https://www.sciencedaily.com/releases/2019/06/190603124709.h...
Someone who jumped off a cliff while trying to build an airplane, was not lauded as a visionary, but as a splat on the ground.
In fact, this is a good way to mitigate risk. Most genes in mosaicism, even if parts of the mosaic is faulty, continue to function or partially function.
Would you rather risk complete failure? (Potentially killing the fetus or embryo.)
Also, someone has to take those (potentially reduced) risks if germ line modifications are needed.
Will we inevitably have "designer" babies at some point in the future morals / legality be damned? Probably so. Is this a good thing? Not necessarily.
The area I can see it being acceptable is fixing congenital defects or genetic abnormalities. "We've made your fetus 10x less likely to develop vascular disease or we've prevented cyctic fibrosis in your baby" vs "We made super strong soldiers who don't feel pain".
So.. we'll make them non-white, and sidestep that issue? I mostly kid. Yet, it's a shame that even a fairly tame discussion about selecting sperm based on DNA has to be dragged through the mud with racism and godwin-eugenics.
At some point humanity needs to stop being so anti-racist-racist. I'm not saying I don't understand where you come from, I just long for the day when we can discuss DNA selection without someone bringing up skin color.
Just because I'm a privileged cis white male doesn't mean I think it is easy for everyone else.
It's of course a silly dream to promote all skin colors equally. While I'd like it, it would immediately cause problems with the people who prioritize skin color over all else.
It's such a tiring state of the world.
“Superiority” is always subjective; the fact that the phenotype you are maximizing doesn't happen to be the same ideal sought by white supremacists doesn't really make a difference to the ethics of such a eugenics program (the steps you are taking to advance it might be a legitimate differentiator, but the purpose would not.)
Not advancing this technology because of how it could be used seems awkward, like not making medicine because it could save bad people. Cutting our nose off to spite our face.
Pretty much by definition.
> We have hundreds of fatal flaws in our genetics.
Pretty much by definition, we (living humans) have no necessarily-fatal flaws in our genetics. We may have some that are fatal when they combine in certain ways or in certain circumstances, but the fatal effects in those conditions aren't the only effects they have.
To say that say a trait we only know to be a significant marker to mental retardation isn't inferior, due to moral reasons seems in bad faith.
I am very accepting that technically (as I mentioned in other posts) we are in over our heads, and are likely to make mistakes. Frankly, these are games we don't have the understanding to be playing. However that is not what we're discussing here.
What we're discussing is whether or not we can morally proceed with any type of engineering. As if doing so would without fail become "lets make black people more dumb, because we don't like them" or w/e. This seems poorly thought out to me.
If I view engineering as yet another medical tool, then lets look at the existing medical tools. Could I not make pills that selectively hurt specific groups more than others? Yes. So while the stakes are likely higher with genetic engineering, I'm arguing that I don't think we should, or even can, be making scientific medical decisions based on wishy washy what-ifs and moral gut feelings of right and wrong.
Lets focus on saving lives.
(1) traits aren't markers: mental retardation is a trait, some Gene may be a marker.
(2) I'm not saying that anything “isn’t inferior, due to moral reasons”. On the other hand, I'm saying that any designation of “inferiority” is (not restricted to genes, but ever, anywhere) a subjective value judgement. And that because of the complexities at play in genetics, people will quite vehemently disagree on judgements about which genes are inferior and should be eradicated, both because they will disagree about which traits should be eradicated and because very often the relationship between traits and genes is complex.
> What we're discussing is whether or not we can morally proceed with any type of engineering.
Sure, that's part of the discussion, and I'm saying, on that question, if it is morally permissible and Nazi eugenics is not, it because you are making tools available that people can choose to use the same way they choose partners potentially for genetic reasons, not imposing their use top-down on society and culling “undesirables.” And not because “the traits we've decided to eliminate are really bad, and those we've decided to promote are really good, unlike the Nazis who made dubious decisions as to the targeting of their eugenics program.”
> As if doing so would without fail become "lets make black people more dumb, because we don't like them"
Are you guaranteeing that all the resulting technology will be freely available to all? Because even if we except that the techniques themselves will be “good” in individual application, that's literally exactly what they should be expected to become except not for the “because we don't like them” reason, but instead for the “because their poor” reason.
Ah, I should be clear I was trying to use vague terms. Any overlap with real terms is coincidence, and not intended. Just for clarification :)
> I'm not saying that anything “isn’t inferior, due to moral reasons”. On the other hand, I'm saying that any designation of “inferiority” is (not restricted to genes, but ever, anywhere) a subjective value judgement. And that because of the complexities at play in genetics, people will quite vehemently disagree on judgements about which genes are inferior and should be eradicated, both because they will disagree about which traits should be eradicated and because very often the relationship between traits and genes is complex.
I agree. Yet, isn't that the case with all medicine? Hell, much of the deaf community wants to stay deaf - should we stop working on hearing impairment to placate one group that likes a thing? This seems like backwards development to me.
> not imposing their use top-down on society and culling “undesirables.”
Oh, I'm not sure where I gave the impression that I wanted to cull society. Nothing I said was intended to be forced. Well, beyond the obvious forcing in that the baby has no say in the matter lol.
I wouldn't advocate for culling in the same way I'm not advocating we forcibly implant deaf people with hearing implants. In my view, that's not a reasonable discussion. You can argue against it if you like, but I'm not the counterpart for that argument haha :)
> Are you guaranteeing that all the resulting technology will be freely available to all?
Nope, definitely not. In the same way medicine is hugely corrupt and not available to all, currently. However just because there are society based problems in distribution of advancement is not an argument to avoid advancement, imo.
If so, we should throw modern medical science out the window. Millions, hell billions of people are unable to get even "old" treatment, let alone modern or bleeding edge treatment. I don't believe that invalidates the usefulness of said advancements, though. It's just a different problem entirely.
In the same way that I don't care about skin color; I also don't care about features continuing to exist and be diverse.
As mentioned, I recognize that we're in over our heads technically. I respect that if we were to "wipe something out" it very likely could end up a huge negative to humanity, due to unknown genes and etc.
However the discussion largely took a moral twist when racism/etc got brought up, and frankly I just don't care. I'm not one for history; so the moral implication of not having a physical-feature-group of humanity around, be it freckles, blue eyes, brown hair, light skinned, tall people or whatever, is entirely lost on me.
Humanity from my perspective seems far worse off having cared so much about our differences that I see little reason to be morally concerned about their absence. I imagine we would be better off for it, since we clearly fail with diversity now, it's not buying us any favors.
Likewise, with or without diversity, we will still certainly find reasons to hate each other. The conversation will just change. We're good at hate.
It might be worth reconsidering that viewpoint. As you say, we're good at hate. We've been good at it, too.
We've seen that something as simple as preferring male children to female children has dramatic societal consequences. It might be reasonable to decide you want to bias your child against being left-handed — lefties do have higher rates of accidents due to using right-handed tools after all. What might the societal shifts be as a result? Might we effectively loose some diversity of _thought_ and progress in our society at large? How might remaining lefties be perceived?
But if we're that worried about even something as minor as lefties, should we not release products either? How are people on phones all the time perceived? If I release a tanning product, should I be concerned about how tanning users are perceived? If I engineer kids with longer hair, am I concerned how they are perceived?
I think we run the risk of anything being hate-able, and thus nothing matters in that regard. Or at least, roughly speaking. Any big change has potentially huge and unknown societal consequences. I mean hell, people were freaking out about a McDonalds McNugget sauce a year ago over a TV Show. I'm not sure the worst of humanity is what we need to nix life saving medical procedures over.
https://www.theguardian.com/science/2018/nov/24/sperm-donor-...
In many banks other than the strawman provided, it meant that 'eugenics' was alive and well most places.
The idea that people choosing donors from a catalog amounts to eugenics assumes that the people choosing the donor (in the case of anonymous donors, which is only a portion of all artificially inseminated children) have some rigor in choosing; i.e., that marketing doesn't influence them somehow. Most of the supposed rigorous screening is nothing more than checking boxes for physical characteristics such as height and eye color, education level attained, and family history of certain diseases.
There have been quite a few sperm bank scandals, including one where the proprietor of the sperm bank used his own seed even though he told his cutomers they were selecting someone else's from a catalog. The Dutch case is notable because it violates one of the recommendations (no law in the U.S.) that limit a donor to 25 births per 800,000 population. [0] But it is certainly not the only case.
[0] "The closest thing to a regulatory body overseeing sperm donation throughout the U.S. is a nonprofit called the American Society of Reproductive Medicine. The ASRM has a set of recommendations that physicians, fertility specialists, and sperm banks are encouraged to follow."
"The ASRM also recommends setting a limit of 25 births per donor within a population of 800,000, in order to lower the risk of accidental incestuous relations. In many other countries, there are laws putting caps on the number of births per single donor within populations of a certain size, but the U.S. doesn’t have any such law."
https://www.theatlantic.com/family/archive/2018/07/sperm-don...
They can. High end sperm banks that do thorough background checks and create profiles on donors already exist.
Much human breeding is traditional selective breeding (whether using sperm/egg donors or more ancient methods, pairings are often selected based in part on the expected genetically-determined qualities of any offspring), but it's just not a program maintained over many generations with consistent selection criteria, outside of conspiracy theories and science fiction (e.g., Heinlein’s Howard Families.)
Shorter term (usually not by intent) eugenics programs have been tried, and they are usually moral disasters tied to movements that are rapidly (sometimes violently) rejected, or at least the eugenics portion of the program is abandoned before long.
Parents already spend ridiculous money for the tiniest benefits for their kids. Genetic editing will be huge.
He may go down in history, but he will appear in the ethics chapter alongside Dr. Rascher and will not be lauded.
I don't see how a targeted genetic alteration is any worse than the millions of random ones that you get though regular fertilization.
As for looking in the eyes, well, progress always has victims. If you don't want to do it, then don't do it. Some other parents will.
"an entrepreneur connected to venture capitalists" made me chuckle.
These tentacles are all over the place.
It's incredibly chilling.
Was Church referring to He or Epstein as a rogue? /s
Is this benefit worth what I assume is a massive risk of developing cancer?
A typical child has 0-3 or so new mutations depending on chance, how old their parents are, etc. We might very well expect that if this treatment was badly targeted it would produce many more. Generally a random mutation won't hit anything that has an effect at all on a cell's operation. Fairly often a mutation occurs in an area that's critical to a cell's function and the fertalized egg never turns into a pregnancy. Rarely the embryo turns into a child which survives to birth but has some problem with missing some protein or other that you need. If this was, e.g., AMY1 which is used to digest starch and which you probably have a bunch of copies of if your ancestors were farmers no big deal. But if it hit Factor VIII then you've got hemophilia and that really sucks.
Only a small fraction of the genes in your body are involved in cancer and it's very unlikely that if you get a germline mutation that it will be one of these that it affects. Again, it's different as an adult because mutagens affect different genes in different cells and you only need the mutations to line up the right way once across essentially all the cells in your body to give you cancer. If one cell in your body gets Factor VIII knocked out then it doesn't matter, other cells can keep making the clotting factor you need and you'll be fine.