
The ‘circle of trust’ behind the world’s first gene-edited babies - sohkamyung
https://www.sciencemag.org/news/2019/08/untold-story-circle-trust-behind-world-s-first-gene-edited-babies
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vector_rotcev
Is there any news on whether or not it worked?

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).

~~~
vibrio
It "worked" is binary and that doesn't exist in medicine. The people who have
the naturally occurring deletion 32 CCR5 mutation aren't immune. they have
decreased risk of infection. There are safe and approved medicines that can
greatly reduce the risk of transmission whether given before or shortly after
exposure. Unconsented Germ line genetic modification of humans cannot
justified, at very least for this use case.

~~~
whatshisface
> _Unconsented Germ line genetic modification of humans cannot justified_

How are you going to get consent from a human that isn't even conceived yet?

~~~
leftyted
I don't believe that speaking of "future consent" of a "potential person" is
useful. A child was never asked if he or she wanted to be born. After birth,
parents essentially own their children until majority.

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.

~~~
whatshisface
Well, I think most people would look poorly on (say) signing a deal with the
Mob eight months before birth to steal your child from the hospital and sell
them into slavery. Another argument that gets bandied about is how we
shouldn't pollute the planet and ruin Earth for our presently nonexistent
grand-children. Another example of worrying about the life of non-existent
children is when people start saving early for a college fund.

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.

~~~
AstralStorm
But what if ruining the future is not the outcome? If the therapy is
beneficial, or even more so, required for the child to survive?

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?

~~~
whatshisface
> _As a note, chances of a child given the therapy, if it 's randomly working,
> are no different than general population, most likely._

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.

------
neom
"That circle included leading scientists—among them a Nobel laureate—in China
and the United States, business executives, an entrepreneur connected to
venture capitalists, authors of the NASEM report, a controversial U.S. IVF
specialist who discussed opening a gene-editing clinic with He, and at least
one Chinese politician. "He had an awful lot of company to be called a
‘rogue,’" says geneticist George Church, a CRISPR pioneer at Harvard
University who was not in the circle of trust and is one of the few scientists
to defend at least some aspects of He's experiment."

"an entrepreneur connected to venture capitalists" made me chuckle.

~~~
casefields
Holy cow. Jeffrey Epstein funded George Church, which is also on the front
page right now: [https://www.buzzfeednews.com/article/peteraldhous/jeffrey-
ep...](https://www.buzzfeednews.com/article/peteraldhous/jeffrey-epstein-
science-donations-apologies-statements)

These tentacles are all over the place.

~~~
akhilcacharya
Epstein himself also was interested in eugenics for this purpose.

It's incredibly chilling.

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Hitton
It's only matter of time before gene-editing becomes commonplace. March of
progress can't be stopped. He Jiankui will eventually be vindicated and
possibly lauded as visionary and pioneer.

~~~
imtringued
What prevents us from using traditional selective breeding on humans? Why
can't women just go to a sperm bank and buy premium DNA?

~~~
SEJeff
I believe the term you're looking for is Eugenics. If you google it for some
background, it has been tried before and uh, didn't end out so well.

~~~
cookieswumchorr
only thing that actually speaks against it is being associated with [godwin's
law]. As far as everyone involved is consenting this shouldn't be an issue.

~~~
SEJeff
Trying to make better babies through breeding / genetics feeds right into the
white supremacy narrative however. It is a really slippery slope, one I'd
rather we not try again.

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".

~~~
asdkhadsj
> Trying to make better babies through breeding / genetics feeds right into
> the white supremacy narrative however. It is a really slippery slope, one
> I'd rather we not try again.

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.

~~~
3JPLW
It's not just skin color, though. It's height. It's face structure. It's the
fact that some Sneeches have stars while others are without thars. It's a
natural diversity of _everything_. Yes some aspects of that diversity are
devastating congenital issues, but IMO we're not ready — socially or
technically — for such power to be safely applied through gene editing.

~~~
asdkhadsj
I agree that we're in over our heads; but your comment makes it sound like I
should be concerned with accidentally wiping out square jaw or blond hair
people for moral reasons. I am not.

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.

~~~
3JPLW
> 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.

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?

~~~
asdkhadsj
The bigger question I think is would it _increase_ hate? This is not something
easily measured, imo.

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.

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teh_infallible
The article doesn’t seem to mention any of the risks of this type of
procedure, only the potential benefit (possible immunity to AIDS)

Is this benefit worth what I assume is a massive risk of developing cancer?

~~~
Symmetry
Probably not cancer? Cancer is usually caused by a large enough number of
mutations occurring in some cell over its lifetime that it starts reproducing
uncontrollably. It's very bad in that a single bad cell can kill you but it
takes a bunch of mutations to occur.

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.

