I am nowhere near an expert on this matter, but probably more informed than the average Joe. What always strikes me in these kinds of debates among non experts is - as outlined in the article - how people equate genetics to certainty. This assertion does not hold up at all once you start taking an even superficial look, but most people never do that.
If you justify this kind of screening on todays data, that most likely overestimates the penetrance for most conditions, you also cannot undo it in the future. If you start screening now and after 30-40 years it turns out your lifetime risks were off by a factor of 3, you still have created a generation that (possibly) underwent extensive and invasive screening, waiting for a diagnosis.
It would be easier to be cautious on penetrance, and reevaluate later, than to never collect the data and hope something changes. The number of these calls to limit our access to data are piling up, and they shouldn't be taken one at a time.
OTOH, we should have off the shelf genetic testing that sends you an SD Card / email and then deletes /anonymizes the results thereafter. You could bring that to a doc when you wanted to, and read the full results yourself. Very little harm in that aside from a de-anonymization campaign.
1) criminal practices of forced sterilisations, ethnic cleansing and mass assassinations to phase out undesired genes
2) the more generic practice of trying to improve the genetic characteristics of your children.
I don't think there is much point in debating 1). But we would be naive to think we are not already doing 2). What else is a prenatal test for down syndrome? What else is selecting your mating partner for desirable characteristics? In animals it's called breeding and it works pretty well. And if you can patch the DNA of your kids to remove potential risks of cancers or other deficiencies, why wouldn't you? Is it better to let cancer take its toll?
Granted, if everyone were sequenced and had access to that information it probably wouldn't take too long before certain categorizations became a requirement on the dating profiles, and that's a slippery slope...
(Regardless, nature filters us all by genetics in several stages, and our entire concept of sexual attraction and social groupings are based on the most direct form of priliminary selection for genetics that evolution could achieve with our limited available senses.)
Everyone starts with 2) and then it creeps into 1).
That should be entirely down to the parents.
Someone having a genetically engineered baby doesn't affect anyone else.
When making decisions that will affect (in planned and unpredictable ways) the phenotype of a person over their entire life course - society / medical experts and researchers etc necessarily need to have a say.
We can't beat or euthanise our children, neither should we have carte blanche over their genetic makeup.
Note - I'm not suggesting that we shouldn't employ gene modification to ameliorate health issues or even to improve other metrics. However this is absolutely not just 'down to the parents'.
Granted, someone who already wishes for or aligns with the idea of ethnic cleansing might start by only publicly sharing their wish for the former to begin with, but I don't see a sensible argument for it being a natural extension of the former.
In a some way this is already happening (eg Judges forcing cochlea implants on babies while denying the parents support in learning/teaching sign language to the child)
Many people see this as an attack on the deaf community and their culture - and I have to agree.
It's simply a horrible argument to suggest that you have to protect a disadvantaged community by making sure they don't shrink. There's much better ways to be respectful of the great human beings these people are.
I just wanted to point out that there is a path from "would like to prevent" to "stop everybody who does not match the profile from living".
The other responses in this thread already show in which bad light people look at deaf people. Maybe start talking to some of them.
Let's try a small thought experiment: Some birth defects stem from dietary issues in the mother during pregnancy, like folic acid deficiency or alcohol consumption.
Let's imagine that we discover that deaf children are primarily caused by a particular vitamin deficiency during pregnancy. We can then either spread the information so parents can supplement, or even fortify foods and cause the community to massively decline or even disappear - or we could withold the information on the vitamins to artificially maintain the population of the deaf community.
You could even extend it to a scenario where we end up relying more and more on artificial insemination or other early processing - the impact of many dietary deficiencies happen extremely early, so to maintain the community we would then have to artificially cause said deficiency to maintain the population of the deaf community.
Heck, we can always just make people deaf later if you wanted to maintain their community. We could also make more people get into "accidents" so that the quadriplegic community is maintained. Sounds absolutely insane when you start to discuss maintaining the population of disabled communities, doesn't it?
Back to the topic, cleansing of the deaf in this context implies a hatred for deaf people in general and wanting to remove all deaf people, which is an emotion entirely unrelated to sympethesizing with the disability of being deaf and wanting to avoid causing more such disability.
I wonder if 100 years ago, the same activists would fight for survival of the leprosy community and its specific culture.
I can understand glorifying pathology if nothing can be done about it. It is a form of coping, similar to the coping that we usually engage in with regard to death. But once the underlying condition starts being curable and the glorifiers attempt to block treatment of children in the name of maintaining the pathology for future generations, they IMHO cross the line to outright evil.
The idea of it being genuinely difficult for a person to be warned or notified is terrifying. Put your phone in your bag and you might as well have left it at home. Honking, people yelling or screaming for you to move out of harms way, even air sirens... You'll have no idea.
All the infrastructure that would support deaf people (like additional signal lights, vibration signals, subtitles...) are also very helpful for everybody else in specific situations.
Everybody is handicapped part of the time
But we are in coercion territory. What I am saying that we already practice eugenics without coercion, we just don't call it that.
See https://www.astralcodexten.com/p/galton-ehrlich-buck for an elaboration.
And then a side effect of all of this is that this huge mass of data is just sitting there to be used for even more nefarious purposes. I can easily imagine a world where an end user is required to submit their genetic data in order to prove their age for an age-controlled app, for example.
If we only imagine the bad outcomes, we'll miss on many good ones. And part of those misses will be worse bad outcomes. For example, if you object to the creation of a third party that could validate your age, what you get is a direct ask for your ID, which is the current reality and far worse.
But to be fair, I see no issues with genetic testing of embryos that could still be aborted. If a person would grow up with a serious illness it could be considered. But then genetic modification should be accessible too, to preserve the life but update the code.
There is a lot of potential problems written into your exome, and some of them can be prevented. Treating a condition which has already taken hold is much more complicated and often less successful. Personalized medicine is pretty much the only way forward nowadays.
> Almost all commercially sold bananas (the Cavendish variety) are exact genetic clones
- Over 90% of children are enrolled in public school.
- 79% of those are in general education classrooms.
yes, yes, the Nazis did it. and Hitler was a vegan dog dad.
Sure, DNA seems like something that is 'real' and 'grounded', but once you get into the specifics of even sample collection and handling, those little errors in the Gaussian distributions start adding up (in quadrature!) and it is surprising how fast the error bars end up swamping any kind of knowledge.
It made me feel a bit funny: I was the weirdo for being AGAINST this, and it seemed like any arguments I put forward were dead on arrival.
A large part of that, IMHO, comes from mass media outright programming people to be afraid. Fear sells, and authoritarian politicians are more than willing to capitalize on selling the "solution".
I know it felt clever writing it, surely many found it clever cynicism, but in no way does it reflect real life kidney donations.
https://www.dw.com/en/inside-a-global-organ-trafficking-netw...
it’s fair to say there would be great advances from such a programme, I’m personally in favour of medical surveillance generally for this reason but you have to be realistic about outcomes
It’s happening, isn’t it? And we’re just lazily walking toward it. Passkeys. They’re part of the move toward digital ids aren’t they? I bet we’ll see these digital ids bundle a password/key manager, instead of being inside one. And have your dna, faceid and touchid.
If I wrote this just 5 years ago, you’d think I was crazy. But now? Tsk.
Isn't this actually happening to us right now, but not via genetics/eugenics, rather by being glued to screens and consuming brainrot?
We're always vigilant against hypothetical problems while pooh-pooing the ones that are unfolding right in front of our eyes.
I know that they went out of their way to a company that does not store genetic info for their sequencing.
In talking with them, they are also very against any form of this screening. The risks of the disease are very bad, but they feel on a population level that the risks of abuse by insurances or governments are much higher, per what they have told me.