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.
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.
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.
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?
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
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 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.
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.
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.
> 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.
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.
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).
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.
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[ 6.0 ms ] story [ 33.2 ms ] threadI 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’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.
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.
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).
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.