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#data#genetic#genetics#children#screening#should#more#future#those#where

Discussion (60 Comments)Read Original on HackerNews

moooo99about 2 hours ago
Generic screening is where I draw a line where the risk of substantial damage is just too high to justify it.

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.

nedruodabout 2 hours ago
You cannot undo anything that's history, including not testing. If you missed a chance to get other tests or treatment early in life, you don't get the chance to fix that later either.

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.

https://substack.norabble.com/p/more-data-please

jvanderbotabout 1 hour ago
You're confusing mandatory public health level screening with opt-in personalized screening. The former is questionable at best - genetic diseases have very little external consequences, just the family / individual might suffer. Any argument about external consequences to neighbors/taxpayers slides us right into the dystopian future you'd like to avoid.

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.

newqerabout 2 hours ago
This is just one step away from eugenics. When the data is in the machine, you just know it will be used for malicious activities.
cm2187about 2 hours ago
The problem is "eugenics" has two meanings which is unhelpful for this discussion.

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?

arghwhatabout 2 hours ago
A problem is that some see 2 as a subset of 1, upset at the idea that parents would wish to terminate pregnancies early that have strong indications of defects. I do imagine a good chunk of those people are of the horribly broken belief that abortions should be outlawed altogether, so not sure how many specifically go against such "filtering".

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.)

Avicebronabout 2 hours ago
The issue is where do you draw the line with 2)? What does "improve the genetic characteristics of your children" mean in practice?

Everyone starts with 2) and then it creeps into 1).

RobotToasterabout 2 hours ago
> The issue is where do you draw the line with 2)? What does "improve the genetic characteristics of your children" mean in practice?

That should be entirely down to the parents.

Someone having a genetically engineered baby doesn't affect anyone else.

arghwhatabout 2 hours ago
There is no path that turns "I would like to terminate my pregnancy if the outcome is unfavorable" into "I would like to commit genocide on everyone whose genetics I do not like".

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.

eruabout 2 hours ago
You say it like applying that label automatically makes it a bad thing.

See https://www.astralcodexten.com/p/galton-ehrlich-buck for an elaboration.

trollbridgeabout 2 hours ago
So far, the gathering of great deals of data on people has not been used for purposes that benefit such people. For example, one of the biggest uses of mass surveillance and data collection is to improve the targeting of marketing, which generally does not benefit the people being marketed to, and indeed often is done to their detriment.

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.

nedruodabout 2 hours ago
Sure, you can imagine it, but you should be able to imagine better solutions too. Far easier to ask for a government ID, or better yet, have a third party, which is trusted, use a cross-check, so that the raw data is never shared, just a binary, yes/no to the age check.

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.

hopppabout 2 hours ago
That's why at-home sequencing should become the norm.

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.

t1234sabout 2 hours ago
Eugenics was rebranded "Genetics" after the war.
ameliusabout 2 hours ago
We're turning into bananas.

> Almost all commercially sold bananas (the Cavendish variety) are exact genetic clones

inglor_cz42 minutes ago
We shouldn't let biology and genetics be forever kept hostage by the fact that 100 years ago some racists (who did not even know what DNA was) used crude mechanisms like castration to push their specific forms of social engineering.

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.

fragmedeabout 2 hours ago
Is it malicious to abort a baby before it has a heartbeat at six weeks because it will have Downs syndrome?
otaconjhabout 2 hours ago
A few stats I just looked up on people with downs syndrome:

- Over 90% of children are enrolled in public school.

  - 79% of those are in general education classrooms.
- Approx. 50% of adults are employed.
someonebaggyabout 2 hours ago
50% is awfully low for today's system where you are employed or starving or someone else is your carer.
vlian2088about 2 hours ago
there's nothing wrong with eugenics as long as it isn't forced.

yes, yes, the Nazis did it. and Hitler was a vegan dog dad.

RobotToasterabout 1 hour ago
He also drank water.
quibonoabout 2 hours ago
I had a funny experience related to this. I was a driver in a car with middle-age mums and one of the things that came up in their conversation was a cold case being solved thanks to DNA evidence. Then the conversation quickly moved onto exactly this, i.e. how everyone should be screened at birth so we can all identify the perpetrator right away; and then this moved to how the CSAM scanning is a good thing and should be enabled worldwide and so on.

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.

mschuster91about 1 hour ago
Some people unfortunately are far too willing to exchange a sense of "security" or "justice" for (effectively) all of their privacy.

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".

N_Lensabout 2 hours ago
I believe this drive to record all the data and control everything (through science or surveillance) is misguided (And perhaps a bit paranoid) and will lead to poor outcomes for everyone.
Balgair13 minutes ago
Especially in something as squishy as biology. A field famous for withholding any kind of certainty.

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.

nedruodabout 2 hours ago
Can I mention the irony that this seems a "bit" paranoid? "bit" because, yes, you do have some good examples of failures to call to, but still, consider how much good would have to be chucked to have avoided those by a general aversion to not record any data at all. You're fear that it will lead to poor outcomes didn't ask what's given up.. whether there might be good outcomes. A rational, bounded set of fears (not paranoid), would have to consider those possibilities too. When I do that I come to the belief that the responses to those fears live at a higher level.. being careful about how we store data, being careful about how we interpret data, being careful about how we communicate data. The answer is not being afraid to gather data.

https://substack.norabble.com/p/more-data-please

Citizen_Lameabout 1 hour ago
Perhaps you can tell us what you really think, without spitting out generic AI soup?
stuartbmanabout 2 hours ago
The difficulty with the generation study is that there is no way to selectively opt in/out; your child is sequenced and then the data is retained until you opt out (at which point it is still retained as part of historical releases). It isnt ringfenced for medical research and can be accessed by pharmaceutical companies. It isnt even kept by the NHS but rather by a private arms-length body of the government which could be privatised under a change of leadership. We've seen failures with UK Biobank data security, why would this be any different?
nulloremptyabout 2 hours ago
It could lead to amazing advances in the distant future but in the near future it just means finding unwilling donors fast! Our society once again is not mature for such technology
mikeoddsabout 2 hours ago
your class C adolescent has been identified as being an eligible kidney donor for a Class B worker, congratulations! please book into your nearest hospital within 2 days
Muromecabout 2 hours ago
At the end of the day what will win is not the society that will supress such technologies harder but one that is able to walk this fine line with benefiting from it without day descending into this
ralfdabout 2 hours ago
This dystopian thought is wrong learning from dystopian fiction.

I know it felt clever writing it, surely many found it clever cynicism, but in no way does it reflect real life kidney donations.

mikeoddsabout 2 hours ago
to call this outcome unrealistic, now or in the future seems incorrect as there is already a thriving pay for kidney trade.

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

WillAdamsabout 3 hours ago
A science-fictional spin on this was in Hal Clement's quite striking short story "The Mechanic".
rootsudoabout 2 hours ago
Or Gattaca.
boobsbrabout 2 hours ago
Gattaca was a warning, not an instruction manual.
jvanderbotabout 1 hour ago
A genetic variation imposes very few externalizes on others, as opposed to say, mandatory vaccinations which are already contentious with some folks. Mandatory genetic testing is a stupid idea.
beaker52about 2 hours ago
In a dystopian, but emerging future, the answer is “Of course and attach it to their digital ID.”

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.

nujabeabout 2 hours ago
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gorjusborgabout 2 hours ago
No
dbg31415about 1 hour ago
> Alpha children wear grey They work much harder than we do, because they're so frightfully clever. I'm really awfuly glad I'm a Beta, because I don't work so hard. And then we are much better than the Gammas and Deltas. Gammas are stupid. They all wear green, and Delta children wear khaki. Oh no, I don't want to play with Delta children. And Epsilons are still worse. They're too stupid to be able to read or write. Besides they wear black, which is such a beastly colour. I'm so glad I'm a Beta.
rootsudo1 minute ago
I also liked seeing Huxley here too. It’s great what seems to be have lost that’s shy of 100 years being published.
inglor_cz39 minutes ago
"And Epsilons are still worse. They're too stupid to be able to read or write. "

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.

sylwareabout 2 hours ago
scifi: that would be far far away in the future, when too many people with direct-gene defect mutations will have had children. But with the complexity of genetics, all that may be pointless: beyond our understanding combination of genes will trigger a disease once some conditions/imbalance are/is met in some environments with some specific history. Humanity may end up as a set of clones of "known" stable genetics over the long run and environments with a "normal" history.
t1234sabout 2 hours ago
Read books by Edwin Black "IBM and the Holocaust" and "War on the weak" to learn why this is a bad idea.
boxedabout 1 hour ago
The negative comments against genetic screening here seems to be 100% from people who either have no serious genetic diseases lurking in their family tree or are lying to themselves and pretending they don't.
Balgair7 minutes ago
I have close friends that has quite serious genetic diseases in the family, ones they passed on to their children too. In that, they are in and out of the hospital all the time. And yes, the disease is degenerative.

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.