
Editing Babies? We Need to Learn a Lot More First - yesprabhu
https://www.nytimes.com/2018/11/27/opinion/genetically-edited-babies-china.html
======
winchling
_> We should not proceed down this road until we know far more about the
consequences of what we are doing._

In the present climate of pessimism it's worth reminding ourselves that we
_never_ know all the consequences of what we're doing. The 'Precautionary
Principle' kills people too; it merely does so in a less obvious way.

Personally I think we should be going hell for leather in identifying and
eliminating genetic diseases that arise from known mutations. And we should of
course expect new problems to arise down the road from these treatments.

~~~
mannykannot
This is a particularly bad example to make that case over, as it is hard to
discern any scientific or medical justification for it, while the known risks
are considerable. Frankly, it looks to me like a posterity-grabbing stunt - an
attempt by the researcher to write himself into the history books.

~~~
candiodari
First, the event reported on is almost certainly a scam (HIV resistance ?
Seriously ?). But let's assume it's valid.

But I don't agree at all with the sentiment. Most/all current gene editing is
about fixing known issues, and in nearly all cases (at the moment) it seems
like the edited gene, even if it goes disastrously wrong, would still be
superior to the "natural" gene. E.g. MVD, MS, ...

Should we also outlaw (and enforce) that people with known genetic defects
produce babies the "natural" way ? How about people where we don't know what
exactly is wrong, but clearly something is wrong (e.g. very small, bone
disease, large family incidence of leukemia, ...). There's some justification
for that as making those babies produces a LOT of terrible suffering, but
aside from the moral problems it seems very impractical to do this as well.

A LOT of "suboptimal" humans are produced, a LOT of humans are born with a
body that just ... won't work in certain ways or will die in painful ways in a
decade or less. Mostly in cases where the odds of a better outcome than the
parents had is zero (meaning the terrible outcome was testable beforehand or
even predictable).

So I would argue there is plenty of reason to give people access altered
babies. Perhaps there are indeed some bridges not to be crossed, but I would
argue that we should probably still cross them a few times to see first.

That will suck badly for a few babies, but not doing it has sucked for ~0.5%
of humanity for all of history (that's about the incidence of genetic defects
that kill on average before adulthood, all taken together).

That means this year alone half a million babies will be born with genes so
defective they will never grow up (but the vast majority of them will gain
enough intelligence to make the inevitable suffering really bad before they
die)

That's not counting serious defects, like Down syndrome, that won't kill but
have incredibly bad consequences nevertheless. Nor is it counting people born
with disabilities that will survive (e.g. blind, deaf, paralyzed (ouch),
deformed, ...)

I feel like that makes it reasonable to say that we should do nothing until we
have something like 10000 edited babies born. Hopefully at that point we will
know what works, actually have some data, and know what doesn't work and
perhaps cut that half a million figure in half or better.

That won't change the number of people who are screwed by their genes
meaningfully. In fact, it ought to make it possible to lower that number by a
LOT.

This is one of those cases where "doing nothing" is not the morally neutral
option. Doing nothing is accepting the status quo as good enough. The status
quo is that worldwide, something like 20 million children are on death row due
to bad genes. 5 US states worth of children. Most of them are children with no
real outward sign of any problem, who will just die, relatively suddenly
(meaning from "going to school and playing" to dead takes months, no more).

~~~
buboard
This seems like a reasonable justification but there still the ethical thorn
of "the child did not ask/consented to this". If science ethics can get beyond
that border, then the new standard might be to seek out rare genetic defects
throughout the world and attempt treatments in parallel.

~~~
jerf
I didn't consent to my current loadout of genes. How would a bundle of genes
consent to be some other bundle of genes? What does that even mean?

~~~
buboard
that you didnt have a choice anyway. but theoretically these babies did. of
course this is all in ideas territory.

------
anvandare
First one to get the (nuclear|genetic|quantum decryptor| ...) superweapon
wins. That's been always true. Any government who's currently protesting and
proclaiming they never will partake in it are either (1) idiots or (2) lying.

~~~
Nasrudith
Really apart from nukes which had a brief preproliferation period when have
superweapons been worth it? Most of the time they have been holes to put money
in and get ego out from the Paris railway gun to the megatanks of Nazi
Germany.

~~~
bohadi
Likewise, the large benefit being a perceived halo of invincibility. A
'superweapon' further provides political positioning to maneuver before,
during, after some confrontation.

My point here is to say worth valued in effects viewed as secondary.

------
refurb
Derek Lowe has a nice summary of the situation and why it's sloppy science.[1]

 _Multiple microinjections were needed to try to ensure that the majority of
cells in the embryo were indeed affected, He said, and even so neither of the
twin girls appears to be a clean job of it. One of them is mosaic for the
desired 32-amino acid CCR5 deletion, and the other, if I’m reading this right,
is heterozygous for a five amino acid deletion. Wonderful, a complete hack
job._

[1][http://blogs.sciencemag.org/pipeline/archives/2018/11/28/aft...](http://blogs.sciencemag.org/pipeline/archives/2018/11/28/after-
such-knowledge)

~~~
buboard
from reddit's biologists i got this:

> he actually doesn't report a mosaic at the CCR5delta32 locus - just a mosaic
> off-target effect in a non-coding region that disappears when sequencing
> tissues from the baby

and heterozygous knockouts are still knockouts so i m not sure why they are so
quick to discredit the work

------
Symmetry
I wonder to what extent the existence and use of CRISPR to edit a baby will
serve to normalize the relatively less radical practice of IVF embryo
selection[1] on a wider range of criteria than we currently accept. That would
also open the door to some enhancements. Many traits that parents might care
about are deeply polygenetic and not amenable to the sort of editing we can
currently perform but could still be selected for in this manner.

[1][https://en.wikipedia.org/wiki/Preimplantation_genetic_diagno...](https://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis)

~~~
bluGill
There are ethical concerns in some areas. However I have no ethical concern
about knocking out the Downs Syndrome gene (though how you would do this is a
different question). Likewise blind or deaf genes can go. As can high
cholesterol genes.

~~~
Symmetry
Downs Syndrome is caused by an extra copy of a chromosome, not a specific gene
variant or mutation. It's something you could avoid by embryo selection but
not by conventional gene editing techniques.

~~~
bluGill
Right, thus the comment that I don't know how you would edit out Downs.

------
kanzure
Here's a transcript of Jiankui He's talk in Hong Kong on his human embryo
editing project: [http://diyhpl.us/wiki/transcripts/human-genome-editing-
summi...](http://diyhpl.us/wiki/transcripts/human-genome-editing-
summit/2018-hong-kong/jiankui-he-human-genome-editing/)

------
buboard
For anyone interested , the slides from his presentation are online

[https://drive.google.com/drive/u/0/folders/1T1zLTtHS2z_cgl29...](https://drive.google.com/drive/u/0/folders/1T1zLTtHS2z_cgl29fN_7qJg7fLA4qlrd)

And livestream:

[https://livestream.com/NASEM/events/8464254/videos/184103056](https://livestream.com/NASEM/events/8464254/videos/184103056)

1:17:00

------
booleandilemma
Meanwhile China is actually _doing_ it and soaking up the investor money,
interested researchers, and gaining the lead.

~~~
adventured
That's false. The city of Boston by itself leads China in CRISPR tech and
innovation.

~~~
baybal2
Have you noticed just how many genetic technology in US is actually made in
China? Boston companies may have high profile, but all the dirty work is done
in China by research outsourcing labs staffed with interns.

~~~
dekhn
I don't think this is true. i work with a people who are CRISPR experts,
what's happening in cambridge (not boston) is legit and local.

------
20kleagues
Kinda unrelated but I was amazed at the speed with which the webpage loaded.
In the age of bloated websites, being able to start reading the content within
a second of clicking was refreshing. Kudos to the NYT developers!

------
nootropicat
I don't understand the inconsistent morality. I bet the author wants abortions
to be legal. If the edited baby turns out to be damaged just abort it, then
try again, no big deal.

------
baybal2
Human genetic engineering is a great thing! All research to advance it and
bring it into practical use should be encouraged.

------
LeicaLatte
China and India have much different problems compared to most other countries.
There in lies the opportunity too.

------
paraditedc
Since we are in the fallout stage now, it is important to note that this news
is poorly received within China, with most organizations against it or denying
ties with it.

I wrote a summary of reactions in China on my blog if anyone is interested (no
paywall, no ads): [https://paraditedc.com/2018/11/26/doubts-within-china-on-
gen...](https://paraditedc.com/2018/11/26/doubts-within-china-on-gene-edited-
babies-story/)

------
hd4
The Chinese realize what others refuse to, it's a race and whoever wins sets
the rules. And what would they gain by waiting and losing the first-mover
advantage?

The article talks about risks, they are certainly not that concerned about
risks, not as long as they get the upper hand in biotech and genome
manipulation.

~~~
Zeebrommer
> Dr. He’s university has disavowed knowledge or support of the research and
> said an inquiry is underway.

Sounds more like an individual rogue action than coordinated effort backed by
vision of "the Chinese".

------
vaultcool
How often did Chinese researchers claim to have done something incredible,
without proper proof and lack of data, and it turned out to be a total scam?
This really feels like another one of these, we'll see what happens, but I
wouldn't hold my breath.

~~~
tgb
But the difference here is that, to the best of my knowledge, there's nothing
particularly difficult about CRISPR in humans. It's routine in other mammals
and had previously been done on human embryos. The thing holding everyone back
was ethical concerns and the possibilities of off-target effects, side-effects
of the mutation, etc. So I'd err on the side of assuming they did do it.

~~~
buboard
Also George Church says it's "probably accurate"

[https://www.statnews.com/2018/11/26/claim-of-crispred-
baby-g...](https://www.statnews.com/2018/11/26/claim-of-crispred-baby-girls-
stuns-genome-editing-
summit/?utm_content=buffer8fbbd&utm_medium=social&utm_source=twitter&utm_campaign=twitter_organic)

~~~
gwern
It's worth noting that none of the moderators or questioners at the talk
expressed any skepticism that He had done it. They all took for granted He
had.

~~~
buboard
do you know why? my guess is they had previous contact/correspondence
throughout the pregnancy

Edit: there are slides of his presentation:
[https://drive.google.com/drive/u/0/folders/1T1zLTtHS2z_cgl29...](https://drive.google.com/drive/u/0/folders/1T1zLTtHS2z_cgl29fN_7qJg7fLA4qlrd)

~~~
gwern
It's really not that implausible a thing to do, you know. People have been
editing human embryos with CRISPR since at least 2014. And He has past
experience, it seems, and had networked a fair amount and seemed to know what
he was doing. George Church also has said that he's seen some of the data and
it looks right to him. Combine that with all the data on the slides, and while
you can debate the ethics or how useful it would be or how well it actually
worked, it seems increasingly plausible that he did _something_ like what he
claimed, and he's not simply faking it all.

