alt Hacker NewsShould every baby's DNA be sequenced?
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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.
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
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.
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.
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".
Read books by Edwin Black "IBM and the Holocaust" and "War on the weak" to learn why this is a bad idea.
No
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.
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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.