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.
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.
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?
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.)
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'.
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 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.
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 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.
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.
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 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.
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.
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 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".
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.
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
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?
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.
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.
> 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.
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.
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.
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.
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?
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.)
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).
> 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'.
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 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.
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 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.
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.
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 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?
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.
Eugenics was rebranded "Genetics" after the war.
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.
We're turning into bananas.
> Almost all commercially sold bananas (the Cavendish variety) are exact genetic clones
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.
- 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.
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.
He also drank water.
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".
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?
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.
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.
However 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...
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?
Gattaca was a warning, not an instruction manual.
A science-fictional spin on this was in Hal Clement's quite striking short story "The Mechanic".
Or Gattaca.
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.
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.
> 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.
https://archive.ph/fNuXP
No
Read books by Edwin Black "IBM and the Holocaust" and "War on the weak" to learn why this is a bad idea.
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.
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.
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