
The CRISPR Baby Scandal Gets Worse by the Day - dwighttk
https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/
======
Laforet
Few slightly technical things not addressed in the linked article but worth
pointing out:

\- The most prevalent types of HIV prevalent in Asia are the T-tropic X4
strain which does not depend on CCR5 for infection. The proper genetic target
CXCR4 is not a viable target for germline gene editing because it's essential
for embryo development[0]. In other words, the children would _not_ be immune
to HIV in any case.

\- The editing was done using a single sgRNA template and a 20bp+ deletion
cannot be produced with this setup. Therefore it's likely that the
experimenters never attempted to replicate the naturally occurring Δ32 variant
in the first place.

\- Δ32 is well studied and known to abolish CCR5 function at both RNA and
protein levels. However, both of Nana's CCR5 alleles are novel and it's
possible that some function may still be retained because the DNA changes are
not extensive enough[1]. These edits really serve no purpose and should never
have been implanted.

[0]:[https://www.nature.com/articles/31261](https://www.nature.com/articles/31261)
[1]:[https://www.ncbi.nlm.nih.gov/pubmed/25043019](https://www.ncbi.nlm.nih.gov/pubmed/25043019)

~~~
dhimes
I thought that this was to be immune from one of the parent's infection. (I
haven't read _this_ article though so maybe my info is outdated).

~~~
vibrio
Even if true that the mother was HIV positive, this situation wouldn't justify
He's actions for a few reasons. i)They are implanting an embryo in an HIV+
mother, there are other alternatives; ii) For 20 or so years AZT has been used
effectively to prevent material transmission of HIV at birth

~~~
dwighttk
According to #1 in the article it was the father who was HIV+ anyway:
"Although Nana and Lulu’s father is HIV-positive, neither of the infants
actually had HIV."

------
JoeAltmaier
This is inevitable. Folks with a will to do this (edit embryos) can clearly do
so. In fact this 'researcher' (or con man) did it 'in secret' which means
without any institutional support. If this guy can do it in his basement, then
what hope is there of putting the genie back in the bottle?

Folks go to all sorts of crazy medical clinics already, for all sorts of crazy
reasons. I predict within the year, the rise of a 'custom baby' clinic in some
country with lazy medical ethic enforcement. And folks will flock there and
pay through the nose.

All the argument in the OP is irrelevant. The technical reasons this instance
went wrong are irrelevant. The ethics argument is irrelevant.

We have to suit up, to prepare to deal with designer babies among us in their
thousands, and soon.

~~~
Balgair
CRISPR and the coming/heralded genetic revolution are _BIG_ deals. Right up
there with the Internet, the Bomb, and Fire. Our world is going to be very
different due to this revolution. Events like these immediately prompt even
the most uninterested person to have deep philosophical conversations; it's
that simple and yet grand. This stuff is important, yo.

That said, this revolution is a bit different, as it's not just the economics,
the social structure, the food, or the power source that is being changed,
it's _your kids_. Placental mammals are, generally, very protective of their
young and we spend a LOT of time and food in raising them. Things like the
genetic revolution are going to vastly disrupt that relationship, one that is
~65 million years old. Yes, today we have seen the first step in that timeline
and it's not here yet. But _all of us_ know that this power, for the
_perceived_ benefit of our progeny, is like an apple is to Adam; we have to
eat it.

But there's the rub. We're doing this because we'll want our kids to be better
off [0]. But then they will not be _your_ kids. At first, they will mostly be
your kids, minus some small percents here and there. But as the generations
pass (10, likely less?) the relationship between mother and child will become
looser and less obvious. The child won't resemble you, won't behave like you,
and sooner than you'd think, won't think of you as a parent.

Here's the other thing, they _will_ be Übermensch too. Not at first, yes, and
there will be a lot of 'issues' along the way, ones that very much may derail
the whole train. But we all know that they will be here eventually (500 years?
200 years?). The kids will be smarter, faster, stronger, gritter, handsome,
charming, witty, etc. You won't hate them or fear them, you will want to be
them and be around them and have your kids be like them too. Why? It'll be
proven to 95% +/\- 0.27% probability (give or take) that the gene editing
works, just like you'd think, endlessly reviewed and studied over and over.

But then you get these Übermensch kids making their kids even more
Übermenschy. And the problem from before comes screaming in. You're doing all
this for your kids, that was the whole point, so that they'd be better off,
more genetically blessed. But there is no _end_ to that idea and this kid of
revolution can really go exponential (provided there is no 'carrying capacity'
to genetics that we've not yet discovered). Eventually, the kids get so far
away from the parents that they aren't _your_ kids anymore. The whole reason
evaporates into this kinda genetic arms race thingy. Yeah, things will go on
for another generation or two past that, but not much more.

We really need to examine _WHY_ we all just know we are all going to get into
this genetic arms race. We really need to know _how_ these kids of things end;
where are the exit ramps and the what do they look like?

We all want the best for our kids, but now we are facing the question of: how
do you define _your_ child?

[0] CRISPR may be able to edit genes _in situ_ , yes, but I am focusing on
germline editing and assuming that once fertilized, you're pretty much locked
into a set of genes and developmental constraints.

~~~
candiodari
This all sounds great but you're somehow forgetting that there are somewhere
around 100.000.000 million humans alive today with genes defective to the
point that they will kill their owners/hosts/whatever you want to call them.

Just in kids, there's going to be something like 1 million kids currently
alive that don't have a beating heart. Babies don't actually need their heart
to be beating, diffusion will provide plenty of oxygen to their organs and
brains. They may not have a heart at all (that's rare though, more likely it
has a hole big enough to disrupt things enough that it won't keep beating,
although even a needle sized hole will kill them if it doesn't close).

These kids will, inevitably, grow. And their growth will kill them. The
strongest among them will live something like 2 years.

50 times as many kids will have a degenerative disease. This may go from
Leukemia to other blood issues right to ALS or MSC or CF. They will generally
start dieing off at 6-8 years and some will grow to 25 or so. But they will
die. And just in case you think 25 is nice, MSC/CF kids will feel like they're
drowning constantly, 24/7, starting at ages 5-8. ALS is even worse. And yes, I
get it, stephen hawking grew to 76. But he is an incredible exception and that
was only possible with constant, 24/7/365 nurse attention. It is not generally
possible. Even for people who get that 24/7/365 attention he grew to literally
double the age of the next patient.

And let's just not talk about people with brain misgrowths or epilepsy. Let's
just not talk about how horrible that is. Half of them will never have the
intelligence of a 3 year old, but they're still mostly in constant pain.

Another roughly-same-size batch will have a serious defect in their bodies
that isn't readily apparent. They will suddenly fall ill, and go from happily
going to school to dead in 2 months following at essentially a random time.
Not because of a disease or condition, but because their bodies really, really
can't deal with things that are overwhelmingly part of our environment, going
from UV light to pressure differences, to water, some insects, ...

That's the damage our own genes put humanity through. In total somewhere
between 2% and 5% (depends on your ethnicity) of people have a serious genetic
defect (something that will strongly affect them until the day they die).
About 1% will die from it, mostly while very young.

Clearly, despite the potential for abuse (although some of your examples ...
are they even abuse ? Mostly not from the only perspective that matters, that
of the kids), there is a massive potential for improvement of the human
condition as well.

~~~
Balgair
I personally know a fair number of people that would love to have/ are in dire
need of 'genetic repair', not just in the germline, but _in vivo_ as well.
Unfortunately, I think the numbers quoted are conservative. Have no doubt, the
genetic revolution is just that, a revolution. We are in the early stages of
this paradigm shift.

My point was more that this revolution is much larger than 'oh no, rich people
will have smart kids' or ' rich people will live forever'. The example I
exposed upon was that the very basic instincts of placental mammals are going
to be challenged (potentially). Genetic engineering at these fidelities has
undoubted potential for good for those in severe need of it. Thank God! But
just like fire or quantum mechanics, it can do harm as well, and in ways we
haven't been thinking about. Like, the fear of 'rich people are going to use
the stock market even better with smarter kids' isn't thinking deep enough.
With the genetic revolution you're going to have to first define the 'people'
part of 'rich people', because that is going to become a variable.

------
cauldron
It's exposed by prospective subject parents that when asked what if the
experiment went wrong, He's assistant simply said "Don't worry, we would help
dispose of the baby."

The small private hospital that approved and held the experiment is one of the
"Pu-tian clique", notorious in China for their customarily misleading,
predatory and fraudulent medical pratices.

The hospital boss also invested in He's two bio startups, one of which is
hawking a failed American 3rd-gen gene sequencing machine "Helicos" that he
bought from his American professor, now goes by the name "GenoCare", billed as
"the world's most accurate", monopoly-breaking, "fully originally and
domestically invented" by him.

~~~
setquk
This is sounding like the future that many science fiction authors warned us
about. And that's not good at all.

~~~
cauldron
What's more scary is the public opinion about this in China.

When first reported on by state media "the People's Daily", being touted as a
glorious historical breakthrough, netizens cheered with overwhelming joy and
pride.

Then came critical pieces, netizens appeared to calmed a bit, "Foreign masters
displeased!", some started to worry about it, "What if the girls start to
pollute the gene pool? It's horrifying." "It's outrageous and immoral, burn He
and the girls to death!" "Sterilize them!" "This is an American conspiracy."
"I'll be blunt here, the morons who oppose it, don't ever join the line when
gene-optimizing treatments come out." "Human thought can't keep up with the
advance of technology, it'd be a disaster." "Some people are always jealous of
other country's tech, yet here they also don't want to be the first one."

------
brownbat
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?)

~~~
jerf
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.

~~~
dragonwriter
> 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.

Not if the latter is willing and able to summarily exterminate the former in
the first generation (or earlier, when they are still developing the tools.)

~~~
jerf
Possible, but with the current geopolitical line up, general attitude towards
ethics by various cultures, and so on, the people willing to exterminate
others for such reasons and the people who are willing to heavily use
"designer baby" tech appear to generally be the same people, so it didn't seem
worth mentioning as a possible outcome.

------
nonbel
Don't believe it. For the monkey data, they claim at least one cell was
"edited" in 80+% of the embryos and that the "edited" embryos survived to
blastocyst stage more often than the controls (ie, there was less than zero
toxicity): [https://drive.google.com/file/d/1IXy47dWNQApcNLW-
bTSfYD2vxBZ...](https://drive.google.com/file/d/1IXy47dWNQApcNLW-
bTSfYD2vxBZZ5UIf/view)

I bet this will come out as made up or fatally misinterpreted somehow.

~~~
pulse7
Maybe this is just a test, how mass media and people would react to something
like this...

------
bencollier49
Wow, the fact that he is called He really confused me there.

~~~
IfOnlyYouKnew
I just read it as extremely funny christian fanfic.

"After the talk, He revealed another pregnancy is on the way".

"It is still unclear if He did what he claims to have done."

"But He appears to have leapfrogged over all of those basic checks"

~~~
checkdigit15
"5\. He operated under a cloak of secrecy..."

Well, they say He works in mysterious ways...

------
ganzuul
> ... “it’s a fairly outrageous assumption that any change to this region
> would lead to some benefit,” Ryder says. “He made new mutations, and there’s
> no reason to think that they’d be protective—or even that they’d be safe.”

True.

> What’s shocking about this “is the blatant disregard of all the rules and
> conventions we have in place for how one should approach any proposed
> intervention,” said Leonid Kruglyak, a geneticist at the University of
> California at Los Angeles, on Twitter.

That's like saying no one can stab you because it is illegal.

It would seem that the systematic error lies squarely on academia and business
ignoring each other for far too long.

ED:

Clearly I have failed the communicate what I mean...

There are two different cultures both using the same tools. One believes it
controls the tools and gets to set rules for how they are used. The other does
not.

Juxtapose, the censorship board for TV in my country, which decided that
calling Yugo surplus "genocide canteens" is bad, but reprehensible filth like
Fear Factor and Big Brother is OK for prime time. Clearly, opinions do differ
and are allowed to differ. - I call into question: Is the case of bioethics
vs. business similar?

~~~
simonh
>> What’s shocking about this “is the blatant disregard of all the rules and
conventions we have in place for how one should approach any proposed
intervention,” said Leonid Kruglyak, a geneticist at the University of
California at Los Angeles, on Twitter.

>That's like saying no one can stab you because it is illegal.

It's like saying no one should stab you because it is illegal.

~~~
ganzuul
Clearly I have failed the communicate what I mean...

There are two different cultures both using the same tools. One believes it
controls the tools and gets to set rules for how they are used. The other does
not.

Juxtapose, the censorship board for TV in my country, which decided that
calling Yugo surplus "genocide canteens" is bad, but reprehensible filth like
Fear Factor and Big Brother is OK for prime time. Clearly, opinions do differ
and are allowed to differ. - I call into question: Is the case of bioethics
vs. business similar?

~~~
simonh
There does not seem to be two different cultures in this respect though. This
guy is very well known in Western circles and consulted with US scientists on
ethics questions. This guy's University in China has condemned what he did.

In fact his actions are directly contrary to his own statements and
presentations on the ethics of using this techniques on humans. See item 9 in
the article. A paper by him on the ethics of this question, written some time
ago and in a lengthy review process, was even published in The CRISPR Journal
just 2 days after the story broke. His actions directly violate his stated
principles in the journal.

~~~
ganzuul
I stopped reading shortly after the bit about the contract. Thought it was an
open and shut case with that...

Hard to reconcile this into something acceptable or understandable.

------
plgonzalezrx8
The way this article is written makes me appreciate when articles address the
parties involved by Title and Name instead of He or She or just his first
name.

Mr. Jiankui would have been less confusing. Editors should be able to identify
issues like this and adjust the writing to avoid confusion IMHO.

~~~
masklinn
> Mr. Jiankui

He is his family name, Jiankui is his first name. That'd be like calling
Dennis Ritchie "Mr. Dennis" throughout an article.

~~~
pbhjpbhj
Surely Jiankui is his _given_ name then, not his _first_ name as in China the
given name comes second, no? So, _He Jiankui [xiansheng?]_ for how Westerners
would write Mr. Jiankui He.

[Corrected, I confused my Oriental honorifics.]

~~~
jerf
"Surely Jiankui is his _given_ name then, not his _first_ name as in China the
given name comes second, no? So, He Jiankui [xiansheng?] for how Westerners
would write Mr. Jiankui He."

To be honest, if you are not intimately familiar with what names tend to be
family names and what names tend to be first name in a given culture, you're
just hopelessly boned in English media unless they explicitly call it out for
you in the article, because sometimes they leave the names in the Oriental
ordering, and sometimes they "conveniently" switch them around for you without
saying so. (Statistically speaking, I have to imagine there have been cases
where the writer switched it to the English order, and then another writer or
the editor switched it again, returning to the Oriental order without
realizing it....) The end result is, I suggest everyone cut the English-
speakers significant slack on this front when they read an article, because
even understanding how names work in the East is still not enough to prevent
errors.

~~~
pbhjpbhj
This is a massively contested issue in the DuoLingo forums.

Mainly I wanted to emphasise that "first name" is often used in Western
culture to mean "given name" but they're not synonymous and using the term
"first name" confuses the situation.

------
ericdykstra
It's at least a little bit promising that the reaction to the CRISPR baby has
been resoundingly negative. From the technical errors pointed out by
scientists in this case, to the visceral reaction to the idea of "designer
babies" to most regular citizens.

Of course, we have some short-sighted scientists who only care about their own
work and not the long-term implications, like He himself and Church, but the
actions and words of these two were roundly condemned.

Hopefully this buys us enough time to see the real long-term implications of
starting a Phenotypic Revolution[1], and we can get some world-wide consensus
to stop gene-editing in humans.

[1]
[https://www.amazon.com/gp/product/1729861563/](https://www.amazon.com/gp/product/1729861563/)

~~~
quotemstr
To me, the reaction has been thoroughly disappointing. Genetic editing of
humans could be the most beneficial medical intervention ever discovered, but
almost everyone respectable is calling for a total ban on the technique,
ostensibly on the grounds that we lack the precision to do it right. But the
real reason, if you read between the lines, is an unfounded and tragic fear of
enhancing human capabilities. I reject this mindset. We can and should make
better people.

~~~
arbitrary_name
Just like the splitting of the atom was beneficial: its a double edged sword
that we have no idea how to wield. I do not want am arms race in which the
wealthy augment themselves while the rest are left to suffer. That's already a
problem given how much medical care is unavailable to even the middle class.

------
entity345
When it becomes possible to have genetically modified babies in a relatively
practical and economical way it will happen.

Legal restrictions and ethical concerns will not prevent it.

Then what?

------
jayrwren
"He’s team deactivated a perfectly normal gene in an attempt to reduce the
risk of a disease that neither child had"

WTF, The Atlantic? Get some copy editing.

~~~
folch
If you're referring to the use of "He's", the scientist's name is He Jiankui

------
jimbo1qaz
"...He spoke at length with bioethicists William Hurlbut at Stanford
University, as well as his son Benjamin Hurlbut at Arizona State University,
neither of whom was aware of He’s plans. The elder Hurlbut spent time telling
He about opposition to the instrumental use of human embryos in the United
States, and the grounds for believing that human life begins at conception."

Aren't those beliefs themselves harmful?

~~~
dev_north_east
How are they harmful?

~~~
crankylinuxuser
>> and the grounds for believing that human life begins at conception.

> How are they harmful?

Because it doesn't stop there.

It starts by banning abortion or restricting to some line (heartbeat, 4 weeks,
etc..).

Doing abortion then turns into murder, and is charged by the state as such.

As the radicals (this belief is primarily christian) get more entrenched, then
this window slides further into conception=life

Then miscarriages and 'intentional miscarriages' itself becomes a crime of
murder. This has already happened in Virginia, Tennessee, and other locations
around thw rodl: [https://www.elle.com/culture/career-politics/a44552/when-
a-m...](https://www.elle.com/culture/career-politics/a44552/when-a-
miscarriage-becomes-a-crime/)

Having this belief takes away women's agency of their own bodies. It turns
them into second class citizens by making their body worth less than the
similar male, solely that they _can_ have a baby.

------
chasd00
ftfa "The children are test subjects for variants that haven’t been vetted in
animals,"

I thought human experimentation like this went out of style after ww2? Isn't
this pretty much a crime against humanity now?

~~~
conistonwater
Yes, it kind of is.

------
yhoneycomb
I know this is probably an unpopular opinion, but CRISPR babies were going to
happen eventually. Just like the atomic bomb. Not a matter of if, but when.

If we don't villainize the creators of the atomic bomb (Fermi, Oppenheimer) I
see no reason why we should villainize this man.

~~~
Digit-Al
It's not the creator of the atomic bomb that's being criticised, it's the
person who's using it to nuke innocent people.

~~~
quotemstr
There was nobody strapped down and forcibly injected here. Everything was
consensual.

~~~
JetSpiegel
Giving forms full of technical terms to high-school educated parents is a
strange form of consent.

------
nkg
Damn, "He's" or "his"?!

~~~
nkrisc
His name is He Jiankui.

------
jcims
Think how simple it would be to 'launder' genetically modified babies (at
least in the US). Just leave them on the front step of a hospital and you're
good to go.

I can't imagine it would be that difficult for a reasonably sophisticated
organization to keep track of the child as it grew up, and with popularity of
genetic testing you could probably find them again anyway.

~~~
IfOnlyYouKnew
I don’t have the faintest idea of what your scheme is supposed to accomplish?

Edit, after turning off _strict mode_ : if you’re thinking of a doctor
performing fertility treatments trying to hide their experiments with CRISPR:
that’s trivial. Just don’t tell anyone. Stealing babies from mothers after
birth to then leave them at hospital doorsteps would actually seem to be ...
_counterproductive_?

Edit 2, after consulting my equally puzzled dog: you do realize these babies
weren’t actually created in a test tube, right? As in: there were still a womb
and the person attached involved in the process.

~~~
imglorp
If you wanted to introduce a gene into a population without it being
identified as intentional, and by whom.

Here's an example for your next scifi thriller: a docility bomb. Identify a
few dominant genes that intensify the social conformity bias--it's already
hardwired into humans to varying degrees--and make 1000 babies with those
adjustments. Leave them on 1000 doorsteps across your opponent's country. If
each baby grows and has two children, that's about 3000 in one generation,
9000 in the next, etc. At some point you're affecting the population's voting,
working, and revolting tendencies.

After what we've seen in long-game US politics lately, this kind of thing is
more plausible than reality.

~~~
jcranmer
Genes don't work like that. Popular conception has it that DNA is like source
code, but the reality of how genes and biological systems work requires a few
addenda:

* The source code is completely undocumented and is written in a variant of Malbolge.

* We don't actually have a reference for that variant of Malbolge, so we're guessing what half the instructions actually do.

* The compiler is buggy and will only rarely compile your code correctly.

* The code itself is not modularized in any sane way. The code for left-pad, for example, also contains code that scans for bitcoin-stealing attacks and automatically removes them when run.

Any sort of idea such as "edit genes to make people taller [or more docile]"
is well beyond our ability to understand, especially since a fair amount of
those phenotypes are _not_ driven by actual changes in DNA (welcome to
epigenetics).

~~~
spdionis
I think the idea is that _eventually_ we will be able to reverse engineer it
though.

If you think about what advances we've had in the last centuries, this could
definitely be possible a few decades/centuries down the road.

------
vectorEQ
this guy writes 'he's' instead of his and after a few of those i got totally
put off this article. the whole second point is just moot. That being said,
playing with genes is about as good of an idea as running with scissors with
our current understanding of them...

~~~
jcranmer
The scientist's name is He (pronounced like "hey", I presume). He's is the
correct possessive form, not his.

Yes, that the name is the same as English's third-plural masculine singular is
confusing.

------
zeroname
If it's ethically defensible to abort a child based on its sex (or for any
other non-medical reason), it should be ethically defensible to mess with its
genome.

I, for one, welcome our new Chinese designer baby overlords.

~~~
IfOnlyYouKnew
To only begin to scrape at the trouble with this argument:

\- it is not actually defensible to abort fetuses based on sex.

\- genetic engineering might make populations more susceptible to epidemics

\- it would increase pressure on others, or other nations, to follow suit so
as not to fall behind in the “race race” of eugenics

\- it would seem to devalue non-engineered life, directly threatening the
universal dignity of all human beings

\- your tired meme is tired

~~~
chasd00
> \- it is not actually defensible to abort fetuses based on sex.

at least in the US you can abort a baby for any reason. The only limiting
factor is time i believe.

~~~
IfOnlyYouKnew
It’s legal because it’s not done, thankfully. The second it appears in birth
gender statistics, it would become illegal, just as it is in, for example,
India.

~~~
zeroname
> It’s legal because it’s not done, thankfully.

You don't know that it isn't done.

[https://en.wikipedia.org/wiki/Sex-
selective_abortion#United_...](https://en.wikipedia.org/wiki/Sex-
selective_abortion#United_States)

Those who strongly favor male offspring may be a small minority. Even without
intervention, there will be more male births. That ratio differs
geographically. It would take a lot of sex-selective abortions to show a clear
correlation.

