
A new treatment promises to make little people taller - hhs
https://www.statnews.com/2019/11/18/a-new-treatment-promises-to-make-little-people-taller-is-it-an-insult-to-dwarf-pride/
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zaroth
As far as ethically questionable drugs go, particularly around genetic
abnormalities, this one seems like it is about as uncontroversial as it can
get.

It doesn’t confer benefits to someone who doesn’t have the specific genetic
issue. It works around the missing protein rather than trying to alter the
broken gene. And there are significant co-morbidities that come along with
dwarfism that make it more obviously a medical issue rather than just being
about physical stature.

It doesn’t change the underlying gene, so the issue can still be passed on to
offspring. So nothing is being eradicated or erased. If it works as described
it should be a highly effective treatment with minimal side effects which
avoid a host of medical issues for the children that get it, besides giving
them a good shot at > 1st percentile height.

I can imagine much more ethically dubious treatments that will certainly be
coming down the line as we continue to identify, target, and find ways to
enhance these genetic pathways.

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mc32
>Is it ethical to make a little person taller?

No [there is no ethical problem], why would something which has no negative
effect on anyone else present an ethical challenge? It doesn’t say make
everyone into a 6’7” basketball athlete, it says make small people taller
which translates into a more normal height range.

If everyone potentially affected by dwarfism in the future were diverted into
normal growth via treatment, in a few generations there would be no one left
who is affected by it physically.

~~~
tzs
Maybe its similar to what happens sometimes with young deaf children whose
parents are deaf? The parents sometimes refuse to get cochlear implants for
the child that would give the child normal or near normal hearing, on the
grounds that they want the child to grow up fully in "deaf culture".

Many who have been deaf all their lives, as opposed to those who lost their
hearing as adults, view deafness as just a difference, not as a disability to
be cured or fixed, apparently similar to the way most see race and ethnicity.
Telling them they need to "fix" their child's hearing apparently to them is
like, say, telling a Jewish family they need to raise their kids Christian.

Achondroplasia has a hereditary component, so there will be families where
both parents have it and their child has it, and they have many relatives with
it. I would not be surprised if some of them feel that there is an
achondroplasia culture, and it is wrong to "fix" a child to make them fit non-
achondroplasia culture.

~~~
big_chungus
There are tons of nasty side effects that go with dwarfism; it's not as though
it's _just_ being short. It can cause bowleggedness, hunchback, limited
mobility of elbows, and all sorts of other issues [0] (yes, those refer to the
specific kind of dwarfism this medicine treats). A parent can't subject his
kid to those just so he can feel like his kid fits a "culture". It's wrong for
the same reason mutilating girls' genitals to fit a "culture" is wrong. It is
unethical to cause a child a lifetime of problems for personal gratification
or because of a parent's insecurities. At least cochlear implants can be given
at a later age; this is a developmental thing which a child cannot choose for
himself at a later age.

[0] [https://www.mayoclinic.org/diseases-
conditions/dwarfism/symp...](https://www.mayoclinic.org/diseases-
conditions/dwarfism/symptoms-causes/syc-20371969)

~~~
ackshually
When referencing baby genital mutilation, it might be worth dropping the
"female". It's just as horrible to slice up a male baby's genitalia, and it's
done much more often.

~~~
vonseel
I wonder how much more prevalent phimosis would be if infant circumcision
weren’t a thing, though. Speaking from experience here, lol, adult
circumcision was not fun.

~~~
mixedCase
Not very. Few countries practice widespread circumcision.

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CryptoPunk
The idea that dwarfism isn't a disadvantage is the kind absurdity now promoted
by mainstream culture in the name of sensitivity.

~~~
kelnos
That was my take on it as well. My view is the opposite: if you have a child
with dwarfism, it's unethical to _refuse_ to treat them, if there's a safe
treatment where the long term effects are understood (I get that this drug is
not yet that, but hopefully someday could be).

Being short _is_ a disadvantage in our society, no matter how you try to slice
it. Even people _without_ dwarfism tend to be looked on less favorably if
they're shorter than average. It sucks, but pretending that being short isn't
a disadvantage is just willful disillusionment.

And that's before we get into any of the health problems that dwarfism can
cause. I look at this similarly to how I see vaccinations: I'd consider a
parent unfit to raise a child if they'd refuse to treat their kid's dwarfism,
if a treatment is possible and reasonably safe.

Pride in a disadvantage is helpful for people psychologically, in order to
cope with the oppression or cruelty of others, but allowing it to turn into a
desire to keep that disadvantage -- and deny others the ability to choose for
themselves whether or not they want treatment -- is truly a bad thing.

~~~
CryptoPunk
>>Pride in a disadvantage is helpful for people psychologically, in order to
cope with the oppression or cruelty of others, but allowing it to turn into a
desire to keep that disadvantage -- and deny others the ability to choose for
themselves whether or not they want treatment -- is truly a bad thing.

Exactly, the desire to boost the self-esteem and social acceptance of those
with disorders is now having pathological consequences.

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bilekas
This is a stupid argument.

If it was a mandatory treatment that would be a problem. If people want to be
taller, go for it.

Like saying : "Oh we cant research cures/preventative procedures for
downsyndrome because that might offend some people". Nonsense

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michalf6
My view on this, if I knew my kids were going to be little: 1) I would
absolutely get my children on that. 2) I don't want others to take it - I
don't want to give my kid to have a chance to mate with someone else after the
treatment. Chances of producing affected offspring are too high.

I'm a bit too tired right now to see a solution which isn't straight up
eugenics, but it's an interesting problem to ponder about. Public record?
Forced sterilization? Abortion? Of whom, carriers and affected or affected
only?

~~~
ladberg
If the medicine is easily available, then you shouldn't have any issues with
your kids mating with people afflicted. Your grandkids can just take the
medicine and it will become a non-issue in the same way that a cleft lip is
today.

~~~
michalf6
That's the issue I'm worried about - after a doomsday scenario like war /
cataclysm / plague my descendants would most likely be deprived of that
medicine, likely resulting in my direct ancestral line dying off.

In a more general sense, I'm very concerned about the point in human evolution
when we can't live our lives and reproduce anymore without the aid of
technology. Then it takes one cataclysm to wipe us out.

I see your point though, this kind of event seems unlikely.

~~~
klipt
After a cataclysm, wouldn't your short sighted descendents have trouble
without glasses too? Does that mean you wouldn't date anyone who's
shortsighted?

Also you're assuming we develop technology to cure all these genetic problems
in the phenotype, without being able to CRISPR them away in the genotype too,
which may happen in the nearish future.

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Invictus0
If someone is born with dwarfism and wants to be a dwarf (sorry if this is not
the PC term), they can be a dwarf. If someone is born a dwarf and wants to be
a normal height, they can be a normal height. Are there really dwarf
organizations arguing that no dwarf people should even be allowed to be a
normal height? Or is this just manufactured outrage for a news article?

~~~
kelnos
I'm not really surprised. There are deaf parents who have deaf children and
then refuse to allow their children to be fitted with cochlear implants, all
in the name of something akin to "deaf pride", and a delusional denial that
being deaf is any kind of disadvantage. It's understandable to build that sort
of thing into one's identity to the point where it's a blind spot, but it's
unfortunate that the kids end up suffering for it.

Part of the issue here is that -- presumably -- the drug must be administered
during childhood, as it's too late to make a difference during adulthood. So
the child isn't the one making the choice, legally: it's the parents.

Personally, I find the question asked of the article to be upside down; I
think it's unethical for a parent to deny a child a treatment that would
improve their quality of life, simply because they are "proud" of their in-
group. It's almost as bad as the anti-vaxxers.

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WheelsAtLarge
Why are people taking offence to this? If you find the treatment distasteful
then don't use it. If no one uses it then it will disappear on its own.
Problem fixed.

~~~
okonomiyaki3000
Because, before you can cure something, you have to admit that the condition
was a kind of flaw in the first place. Maybe it's easy for most of us to say
that dwarfism clearly is a flaw but, if you were a dwarf, you may see it
differently.

There was a similar outcry some years ago when there was talk of a cure for
some kind of deafness. And, it's a little different, but kind of similar to
Iceland's near elimination of Down Syndrome.

~~~
NeoBasilisk
Calling it a "flaw" is probably going too far. It is a simple acknowledgement
that if your physical traits or abilities diverge significantly from what is
average, then your quality of life will suffer in some way.

Depending on your condition, maybe you won't suffer much of a loss, or maybe
you will suffer significantly. The simple reality is that society is not ever
going to fully accommodate someone that is 4'6" (137cm).

As a somewhat irrelevant example, I'm colorblind, and I don't see any
redeeming value in that trait. It's a mild inconvenience, and it there were a
treatment to make it go away without significant side effects, that would be
nice. There is no reason to be "proud" of your physical attributes that you
had no part in creating. If you are part of a historically marginalized group,
then pride in your group can emerge as a method of coping with that
oppression, but otherwise there is no point.

~~~
okonomiyaki3000
Being short is not a flaw but dwarfism is not the same as simply being shorter
than average. It is objectively a flaw because it can directly lead to various
other health problems.

Van Gogh was colorblind. Had his parents been able to cure him of it at a
young age, we would likely not have any of his works now. I'm not trying to
make any argument by saying this. I don't know what it means.

~~~
ALittleLight
Perhaps he would've been a better artist without being color blind.

Either way, a person's life and health should be up to them, or, if they're a
child, to their parents with their involvement. We shouldn't be condemning
people to preventable medical defects just because it might produce benefits
in some impossible to imagine way.

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vonseel
This (article) is ridiculous.

That was not the first “R” adjective I wanted to use to describe it.

People will find anything to get all PC and fussy about.

You can’t make a blanket statement like “little people don’t want to be
taller, they celebrate their dwarfism” or whatever argument he’s making.
Certainly there are plenty of people affected by it who wish they could have
had a treatment like this.

Hell, I’m 5’10” and I’d have gladly taken HGH or something when I was younger
if I knew it was a chance to grow a few extra inches.

Like the song goes... I wish I was little bit taller, I wish I was a baller, I
wish I had a girl who looked good I would call her, I wish I had a rabbit in a
hat with a bat... lol

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marcoseliziario
3, 2, 1 for celebrities accessing this treatments through Hollywood doctors,
and then the spawning of a thriving cottage industry of shady tree doctors to
satisfy the demand from their social media followers.

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oh_sigh
I wonder how long until rich parents are giving this to their kids who will
"only" be 5'10" so they can be 6'2"?

~~~
pacaro
Is there any implication in TFA that this would work? It appears to work on a
pathway which converts collagen to bone, if that is already happening, would
adding this drug make it happen more? is there any "more" to happen?

~~~
big_chungus
I am possibly wrong, but from what I've read, this medicine allows the body to
produce its own natural supply of the protein in question (which would
otherwise be defective). It shouldn't increase the quantity produced, just
allow what is produced to work.

