Should every baby's DNA be sequenced?(economist.com) |
Should every baby's DNA be sequenced?(economist.com) |
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).
I doubt that there'll be a sane debate about this and I would love to be proven wrong.
Whether it's criminal or not depends on the jurisdiction in question.
Even abhorrent things can be perfectly legal, and many good things are criminalised.
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.
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.
- Over 90% of children are enrolled in public school.
- 79% of those are in general education classrooms.
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.
> Almost all commercially sold bananas (the Cavendish variety) are exact genetic clones
If you wouldn't mind reviewing https://news.ycombinator.com/newsguidelines.html and taking the intended spirit of the site more to heart, we'd be grateful.
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".
*(which I mean in the literal meaning in the matrix)
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.
A baby will become a powerful adult after 30 years, when their DNA info might become valuable (for forensic, health, research or other reasons). It's a long time for the investment to return. Why not sequence all people's DNA now, obligatory by law. All that it's needed is a little saliva and a wide lab infra.
While the people in power yesterday/today might not abuse databases of their entire population's DNA, those of today/tomorrow might. In the long-run, of 10y,20y, 50+y, you cannot guarantee this information will not be used for extreme harm. This is different that vaccines. Not everyone can be vaccinated, so to ensure that everyone is protected, everyone must be vaccinated. DNA sequencing at most only helps the person and at most their offspring. It should be a choice, and not mandatory.
> my country
out of curiosity, what country?
DNA info is not so much of value as it sounds. Genetic testing has very poor results and therapy is almost non existent. If they (govs and orgs) could extract value, they would make it mandatory for all, like fingerprint and face photo.
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 it felt clever writing it, surely many found it clever cynicism, but in no way does it reflect real life kidney donations.
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.
And yet, in hindsight, I would've wanted it for me, my sister, and my wife.
My sister and I have a certain type of EDS. My wife has another kind.
Born today, based on the current science, tests would reveal this. It wouldn't change the progression of the disease, but it would have dramatically changed the journey.
At the very least it would've avoided the self-doubt, and it would've provided defense against doctors when they said 'oh you're just tired' (we all have the EDS symptom that sometimes our batteries are VERY low).
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.
no, it is quite quite bafflingly the other way around. those who are against abortions non-religiously almost always make exceptions for rape, risk to the woman's life or health, and things like Down's.
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
Snark, provocation, denunciatory rhetoric, comments with high indignation/information ratio - all this is against the site guidelines. We're not talking about borderline calls here!
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.
Do you know how they make shoes or clothing off-the-rack that fit most people?
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'.
Do you think it would be fair to have the children of billionares to be much much more intelligent than normal people, let along the children of poor people? I'm not sure what the answer is, but its very worth thinking about. If you could grow an Einstein in a lab, imagine if all the Einsteins that were grown ended up being biased to Musk-adjacent worldviews.
This is really not simple
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.
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.
But we are in coercion territory. What I am saying that we already practice eugenics without coercion, we just don't call it that.
I agree that there were pretty strong restrictions, many of them unnecessary. But in most places the population was pretty compliant or otherwise ignored the demands. I don't remember much brutality.
What's your evidence for brutality?
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.
Twisting things around to make people seem bigoted for saying that disability is bad (not that disabled people are bad) is just evil.
It has to be turned around 180 and we have to point out that this push is moral corruption and evil. Even if it comes in part from deaf people it is evil. It doesn't matter what mental acrobatics is developed around this, to wish for other people to become disabled is evil and morally outrageous.
It's the same with the "obesity is actually not unhealthy" crowd, all part of the same ideological matrix.
But then the same enlightened crowd turns around and pushes to legalize euthanasia for depressed people in their 20s...
We are not even a hundred years away from when they tried to make Jews disappear forever.
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
What are important rooms?
> Most people have there phone on silent/vibration anyway and recently everybody uses noise-canceling headphones outside to not be bothered by other people...
> Everybody is handicapped part of the time
A phone on silent still blasts public safety warnings at full volume. A phone on vibrate can still be heard. Noise-cancelling headphones still let the outside through at a lower volume.
Very different scenario.