Should every baby's DNA be sequenced? | Hacker News Reader

Should every baby's DNA be sequenced?

economist.com

23 pointsnedruod88 comments

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.

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

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.

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.

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.

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.

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.

I really don’t want to be forced to contract with a third party in order to do basic things like be able to buy something in a store.

I guess you don't like paying with a credit card?

> So far, the gathering of great deals of data on people has not been used for purposes that benefit such people.

Do you know how they make shoes or clothing off-the-rack that fit most people?

Is it malicious to abort a baby before it has a heartbeat at six weeks because it will have Downs syndrome?

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.

50% is awfully low for today's system where you are employed or starving or someone else is your carer.

The employment rate in the USA is only like 59%. Amongst Men over 20 years old it's ~68% and woman ~56% so it's actually not that far off the average.

[flagged]

He also drank water.

Could you please stop posting unsubstantive comments and flamebait? You've unfortunately been doing it repeatedly. It's not what this site is for, and destroys what it is for.

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.

I'm responding to flamebait, not posting it. and expressing my point of view in a sentence or two instead of the usual walls of watered down text common here does not make it unsubstantive.

If you mean you aren't intending to post flamebait, of course I believe you, but your posts have certainly been flamebaity in the sense that we use the term here, which is mostly about the effects such posts tend to have (https://hn.algolia.com/?dateRange=all&page=0&prefix=true&sor...).

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!

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?

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).

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.

I agree, though one could make the argument that our modern nanny states have been pretty brutal at enforcing health policies during covid, and if they convince themselves that they can eradicate certain diseases by mandating DNA patching or pregnancy terminations, them doing so "for our own good" is in the realm of the possible.

But we are in coercion territory. What I am saying that we already practice eugenics without coercion, we just don't call it that.

Vaccine mandates are an entirely different game than "this kind of life has no right to existence".

Well if you mandate DNA patching, how do you enforce it?

As far as I can tell, our modern nanny states haven't been 'pretty brutal at enforce health policies during covid'.

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 would like my child to not be deaf" -> "Many (most?) people would prefer their child to not be deaf" -> (3) "Deaf community shrinks" -> "Social support for deaf people is reduced/seen as not necessary" -> "Parents of deaf children are blamed for carrying out the child" -> "Parents are nudged (forced) to terminate the pregnancy" -> goto (3)

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.

Deafness is a huge handicap, in many ways significantly worse than blindness. That the victims of this horrible ailment start to self identify with it isn't a reason to subject new humans to it.

I have previously had to install simple things like doorbells for deaf people, which is done through a very strobe light that can be seen from almost the entire apartment... if you're not behind a closed door at least.

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.

Then maybe install the strobe lights in all 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...

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

> Then maybe install the strobe lights in all important rooms

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.

In terms of slippery slopes, this argument is climbing atop one. Where does that end? Should we ban doctors from performing surgeries that would save someone's hearing? Should we ban protective gear that might diminish the size of the deaf community?

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 said nothing about banning performing surgeries or forcing parents to carry out a deaf child just for keeping some community alive.

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.

Who shows them in "bad light"? Sane people see the condition itself in "bad light" not the people affected, who deserve compassion, help, accommodations etc.

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...

A shrinking deaf community has nothing at all to do with ethnic cleansing, and social support does not shrink for less common diseases - it's usually the opposite, with support proportional to how rare and inconvenient the disability is.

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.

Many people see the deaf community as something that should ideally disappear by curing them.

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.

Should "many people" get to decide what the deaf community, whatever that means, should do, even when the people affected do not agree?

We are not even a hundred years away from when they tried to make Jews disappear forever.

> 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.

> That should be entirely down to the parents.

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'.

But there's still some really major issues with 2).

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

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.)

>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".

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.

The people who do 1) claim do to it for 2)

There's definitely a sane debate needed on this. I think there's a lot of things here people wouldn't be against, but at the same time more thought needs to be put into this. Like what if you could GMO your kids to be smarter, but it costs a lot. Should this be illegal, or should the govt pay for it for poorer people, and it just gets better and better.

I doubt that there'll be a sane debate about this and I would love to be proven wrong.

> 1) criminal practices of forced sterilisations, ethnic cleansing and mass assassinations to phase out undesired genes

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.

Eugenics was rebranded "Genetics" after the war.

We're turning into bananas.

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

The antidote to that (I think, I've got loose vibes about biology and genetics) would probably be introducing more variation via some manipulation of the genome, maybe crispr?

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.

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.

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.

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".

reminds me of captian America 2, in which the villains (hydra) said that what people actually want is security, not freedom. most people are boring blue-pillers* in this regard.

*(which I mean in the literal meaning in the matrix)

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.

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

Perhaps you can tell us what you really think, without spitting out generic AI soup?

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.

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?

At least in my country a blood sample is taken from every newborn to test for specific preventable genetic diseases (eg phenyl-ketonuria).

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.

> not sequence all people's DNA

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?

Greece. They test for congenital hypothyroidism (which leads to cretinism) too.

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.

> 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.

"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.

I also liked seeing Huxley here too. It’s great what seems to be have lost that’s shy of 100 years being published.

> A gramme is better than a damn.

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

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

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

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.

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

A science-fictional spin on this was in Hal Clement's quite striking short story "The Mechanic".

Or Gattaca.

Go ahead and you will cause a massive uproar with untold damage to society when fathers will figure out that a lot of babies are not theirs. One of the reason why private paternity tests are illegal in France.

Interestingly if sufficient information is stored it would solve the problem. Cost of children would be directly pointed at the biological father. Thus not enslaving the cheated man for massive cost. Vulnerable must be protected from those with power of the system behind them.

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.

Gattaca was a warning, not an instruction manual.

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.

https://archive.ph/fNuXP

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.

I think this is very dangerous.

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).

Gattaca was such a good film.

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.

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.

Universal screening is not the same as focused screening for a family with a known issue and then screening gametes for IVF though. I think it's the last part that some people scream "eugenics!" at and draw parallels to the nazis. This is what I'm against.

I don't think it should be mandatory but ofc it should exist; people should be able to choose.

Many people think it shouldn't be and that any interference in the germ line like this is eugenics and by association evil.

Read books by Edwin Black "IBM and the Holocaust" and "War on the weak" to learn why this is a bad idea.

Reply on news.ycombinator.com