this post was submitted on 18 Nov 2024
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Here is my take, assuming:
Situation 1:
Woman learns she is pregnant, say week 6. Gets a routine scan on the embryo. She discovers it has a genetic disorder. That will cause it to not be able to breathe well, running and playing will not be an option for your baby, they will survive; sweet no brainer there; splice in the fix doc. Correction is spliced in the next week, monitoring for rest of normal pregnancy.
Situation 2:
Woman learns she is pregnant, say week 6. Gets a routine scan on the embryo. Doctor says, looks like there is a genetic defect, the audio nerve is not going to develop normally, your baby will hear badly at birth, and then over the next two years will go permanently deaf. Implants could fix this issue after birth, and living as a deaf person is not difficult. However we can ensure that the nerve develops normally and your baby will have perfectly normal hearing.
In situation 1, the obvious answer is to fix the issue, having life long breathing difficulties that could easily be avoided would be cruel.
In situation 2, in my opinion it would also be cruel to impose on a kid; hey we could have fixed your hearing in a safe and effective way, but we decided for you before you were born that you would be "special".
I get where people are coming from, but they are looking at it with 2024 eyes, not 2424 eyes. Why would you impose on a kid, who has no say in the matter, a disability? Because that is the choice you are making, you are imposing a disability on a child that does not need to be there.
We currently give women folate, to protect against neural tube defects; along with a bunch of other interventions. We are already "interfering" with the "natural" progress of pregnancy and birth, we are only going to get better at it.
And also the conflating of eugenics and fixing birth defects is completely off base. These are only related by the fact that breeding is involved; they have nothing in common beyond that. In the same way that my kitchen knives would make great stabbing weapons, but cooking and stabbing only really have the tools in common.
It's not off base and what you're describing is called liberal eugenics, or new eugenics.
[...] some critics, such as UC Berkeley sociologist Troy Duster, have argued that modern genetics is a "back door to eugenics".
I'm sure the laws set in place after the eugenics wars would be strict enough to not leave such wiggle room.
It doesn't really seem like in either situation I described that the treatment-enhancement gap has been breached.
There is no PGD, we are considering Star Trek levels of scanning technology. Both situations resulted from natural fertilisation, there was no group of potentials to select from.
The goal of eugenics, is unambiguously, to breed for some ideal. This resulted in some pretty dark times in the recent past.
Realistically, a lot of medical technology today is the antithesis of the eugenic ideal. Allowing those, who in the past, would have died from various causes to live. We at a species are the stronger for it.
Fetus is developing normally, except it has no ocular nerves. There is no cure for this. Baby is born and neural interfaces are implanted, along with a device for feeding EM sensory data directly into the brain.
Ok but for scenario 2 have you asked the deaf? Many of us say to do just that. In fact we disproportionately fight the hearing by saying that infants cannot consent to cochlear implants
Would deliberately withholding "cures" be considered child abuse?
I took several years of sign language and I have to be real, the deaf community at large have some fucking weird opinions about healthcare
Deaf kids getting shunned because they got a cochlear implant is a good example
Or parents refusing inexpensive implants early in life for their kids because they’d rather their kid be deaf like them than even have a chance to develop regular speech patterns. It’s cruel.
Combine this with the simultaneous victim-complex about how hard it is being deaf (which is entirely fair. We did a project where we all wore earplugs for a week at school, and that was HARD. Got really good at cheating in ASL tho) and it all makes me feel kinda…. Icky?
“Being deaf isn’t a disability, but also we will shame you if you get treatment. Also being deaf is so hard and there’s a lot we can’t do. But I won’t let me daughter get implants, because then she would be less deaf than me, which isn’t a disability”
That is a difficult question. I would err on the side of yes. With some caveats.
Not treating some serious genetic conditions when safe, effective and proven treatments are available. Could easily be construed as abuse.
When considering the Star Trek universe medical care is free and easily accessed. Treating these conditions would be the default.
Turning this the other way around, and looking at it from the point of view, that the technology is the standard. What argument could you make in favour of leaving the condition in place?
The deaf see it similar to how the intersex do, that it should be the individual’s choice when they’re old enough to decide.
Except that’s way after critical language development could be aided by implants, leaving deaf adults who later decide to get them stuck having to relearn how to talk.
That is an interesting point, as you say infants cannot consent to implants. Which does raise ethical questions.
But you are, I think, still looking from a 2024 perspective, where none of the technologies are even remotely available.
If you can consider it from the 2424 perspective, the treatment is non-invasive, permanent, safe and effective. It has been the standard for 100 years. Star Trek medical tech is magical to us because it is simply a story, but consider if it were real, what argument could you make to withhold the treatment?
I would see this as similar to the anti-vax arguments; withholding vaccines from a child who then goes on to catch a life altering disease, is a form of abuse. The kid cannot make its own judgements or medical decisions, but it sure can catch polio.
And it’s cruel, because then they never get the opportunity to develop speech when they’re young with audible feedback.