A new treatment promises to make little people taller
statnews.com
statnews.com
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.
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.
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.
[0] https://www.mayoclinic.org/diseases-conditions/dwarfism/symp...
That should be a jail-able offense, assuming they are making a decision that can’t be undone.
Why would it? Unless the changes are made at the genetic level nothing change. Well, some things will change.
I’d be okay with some sort of disclosure for future partners as we’d be for many things of this nature.
It's hard for me to believe something is wrong and shouldn't be done while simultaneously believing it should not be prevented with policy.
We need to evolve the ability to uncover deception with our minds and prevent betrayal innately. Those who can do that possess gifts that will reward the successful species in the very long term.
As it is, we are unable to detect and prevent it as a society and we need that skill. I admire it in those I know who have it. I wish I was better at it.
And then they get offended when you say that's eugenics.
Plus, if it were a hereditary genetic condition, abortion would eliminate those genes from the population reducing the occurrence over time.
Or some genes on the mothers side which will increase likelihood of engaging in behaviour that increase the chances of the foetus having down-syndrome? (Smoking etc...)
Because if so, then a huge evolutionary pressure has been lifted from having a down-syndrome child. In the past having such a child would incur immense cost. There are of course difficulties birthing and sustaining an evolutionary dead-end which would reduce the birth-rate of down-syndrome having couples right?
Therefore, genes which increase the likelihood of having down-syndrome will proliferate much more in world which aborts down-syndrome foetuses right?
As long as the side effects are well studied and strictly less bad than the alternative. If the side effects were awful then it would be much trickier, but it seems like that's not the case.
Should parents change their child's skin colour.
If you think that has ethical issues, then so does height.
Cosmetics can change your life path
Crooked teeth we accept as ethical to change in children.
Breast size we don't.
I think ethics is involved, even if it's wrong.
So, it's not just height that gets fixed.
I believe this is true of all medical procedures that counteract genetically maladaptive traits.
Less than rational thought in such a matter, I believe is very selfish and unkind to a life that I may create.
I understand this isn't the normal way of thinking on the issue, but I wish it was more common.
Sometimes "fixing" a specific condition sounds obviously ethical to some and to others it is offensive.
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.
Exactly, the desire to boost the self-esteem and social acceptance of those with disorders is now having pathological consequences.
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
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?
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.
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.
Everything on that list is eugenics.
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.
> The goal, according to the company, is to prevent the medical complications associated with achondroplasia, which include sleep apnea, hearing loss, and spinal problems.
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.
I grew up in an environment of alcoholics. Many of my family were alcoholics.
My sister and I are most definitively not alcoholics. We purposefully avoided such a path. My cousins also.
We are seen by some of the older family as 'prissy/non-enjoyers of life/less willing to be 'alive/etc'. Though overall my parents I'm sure are happy we don't drink like they do/did.
Whenever you break from the group, it causes tension. One would hope most adults weren't so small minded that they would prefer their children suffer like them, so long as to not highlight their own ghosts. One generation should want the best for the next, and that means leaving behind things that have overwhelming negatives (such as genital mutilation) - I'm sure one day we will look back at purposefully keeping a child def or 'little' as a form of extreme cruelty.
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.
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.
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.
That's not at all a logically consistent argument. His art might have been better without the colorblindness. Or it might have just merely been different, but equally well-celebrated.
Regardless, you can't make decisions based on extremely unknowable hypothetical futures. If Van Gogh hadn't created any art at all, the world would still turn, and no one would know the difference. It's natural to imagine a world without Van Gogh's art with sadness when you already have his art; but had it never existed, no one would be around to care.
This seems to be speculation from a Japanese researcher who wrote a colour-blindness simulating app.
Yeah, it seems to do more harm than good to turn a disability into an identity. I totally get that nobody wants to feel "broken" and it probably makes some people feel better to say there's nothing at all wrong with them, but it becomes an issue when it leads to attacks against people who want to help others overcome their limitations or people who want their own limitations overcome.
If I could give my children even small relatively insignificant advantages, or help them avoid some of the struggles I've had to overcome I'd want to.
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
The problem with giving it to healthy children is that it could make their lives worse even though they get taller (otherwise I see no problem with taking it).
So yes, rich parents are already juicing their kids up on HGH to give them an extra inch or two of height. It's not the same exact treatment as the OP but it is happening today.
https://www.thisamericanlife.org/687/small-things-considered