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janewaytoday at 6:39 AM19 repliesview on HN

“We have no cure. I don’t want to know.”

If astronomers announced that a large asteroid might strike Earth in twenty years, and that we currently had no way to deflect it, nobody would respond by saying, “Come back when you already have the rocket.” We would immediately build better telescopes to track it precisely, refine its trajectory models, and begin developing propulsion systems capable of interception. You do not wait for the cure before improving the measurement. You improve the measurement so that a cure becomes possible, targeted, and effective.

Medicine is no different. Refusing to improve early, probabilistic diagnosis because today’s treatments are modest confuses sequence with outcome. Breakthroughs do not emerge from vague labels and mixed populations. They emerge from precise, quantitative stratification that allows real effects to be seen. The danger is not that we measure too early. It is that we continue making irreversible clinical and research decisions using imprecise, binary classifications while biological insight and therapeutic tools are advancing rapidly. Building the probabilistic layer now is not premature. It is how we make future intervention feasible.


Replies

dataflowtoday at 7:55 AM

This analogy has a rather fatal flaw, which is that we already know people who've gotten Alzheimer's, and we also know for a fact people will continue to fall victim to it, at a pretty predictable rate. i.e. the detection has already happened! Anyone who was waiting for a potential victim to appear before researching the cure already has all the reasons they need to research it. Detecting whom exactly the next victim is going to be isn't really going to change anything as far as researching a treatment or cure goes. (Unless the person is super important or popular or rich, I guess?)

This is absolutely nothing like the asteroid example, where knowing that anybody is going to fall victim to it would itself be news of astronomical proportions. Previously there was a high chance the event wouldn't happen, and now it seems likely it will, so that entirely change the calculus of your priorities.

This just completely destroys the analogy. (There are other reasons it doesn't fit too, but one is enough.)

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jader201today at 7:12 AM

> “We have no cure. I don’t want to know.”

> If astronomers announced that a large asteroid might strike Earth in twenty years, and that we currently had no way to deflect it, nobody would respond by saying, “Come back when you already have the rocket.”

I don’t think the analogy fits, for a couple reasons.

1. People not wanting to know whether they have Alzheimer’s is because of the fear of a fate worse than death — living with Alzheimer’s.

2. People not wanting to know whether they have Alzheimer’s is not the same was not wanting a way to detect it. As you said, being able to measure it may help lead to a cure/treatment. I doubt people are against improving detection — they may just not want the detection to be applied personally.

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cafebeentoday at 6:26 PM

While not a cure, there are many known modifiable risk factors for Alzheimer’s, so to some extent we know enough to deflect / mitigate dementia: https://www.thelancet.com/journals/lancet/article/PIIS0140-6...

foobiekrtoday at 7:20 AM

I want to know so that I can make plans. Including end of life plans, in all senses.

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ABCLAWtoday at 5:32 PM

>Refusing to improve early, probabilistic diagnosis because today’s treatments are modest confuses sequence with outcome.

While you're right from the perspective of humanity taking the steps of gathering data then tackling the disease, most developed countries have single payer healthcare systems that require some level of cost-benefit analysis to approve covering new diagnostic systems.

Alzheimer's disease progression doesn't seem to have any notable preventative indications other than 'eat well, exercise and stay mentally active', all of which are standard recommendations.

Recall that this isn't an issue deciding between funding and non-funding. It's an issue deciding between funding Alzheimer's diagnostics, new GMP agonists, new screening options for highly preventable cancers, etc. Building out a dataset is nice but unless that's surplus money redirected from other programs it's going to come at a real flesh and blood cost.

mejutocotoday at 11:21 AM

That is more or less the plot of the movie "don't look up".

https://www.imdb.com/title/tt11286314/

lr4444lrtoday at 3:17 PM

Okay but even that analogy is limited. Incurable progressive diseases almost invariably have lifestyle factors, supplements, or medications that can at least slow the rate of progression for many people. Those are also often more effective when started during early stage detection. There is literally nothing the average person can do about the asteroid.

_alternator_today at 4:40 PM

>”We have no cure. I don’t want to know.”

Is this a response to another comment or did I miss the quote in the article? Otherwise it’s just a straw man.

MadxX79today at 10:32 AM

Absolutely, the belief in scientific circles is that the way forward to develop cures (or at least treatment that slows down the progression) is to treat it early. When you get to the point where you start showing clear symptoms, your brain is already mush. If you have a potential treatment that attacks the root cause, you would have to catch the very early, pre-clinical, stages of the disease, but without good diagnostics there is no way to do that (short of giving the disease to a wide swath of the population, like a vaccine... but that gets expensive very quickly, and side effects become a bigger worry.

KurSixtoday at 10:45 AM

I get the logic, but I think the emotional side is a lot harder than the asteroid analogy makes it sound

mseepgoodtoday at 8:18 AM

> We would immediately build better telescopes to track it precisely, refine its trajectory models, and begin developing propulsion systems capable of interception

That's not what would happen. We wouldn't mobilize. We'd fragment. Within days, the prediction would be declared partisan. One bloc would call it settled science; another would call it statistical hysteria. Billionaires would quietly commission private shelters while publicly funding studies questioning whether the asteroid even qualified as "large." News panels would debate whether the projected impact zone was being unfairly politicized. Conspiracy channels would insist the asteroid was fabricated to justify global governance. Others would insist the real asteroid was being hidden. Amateur analysts would flood the internet with homemade trajectory charts proving the professionals wrong. Death threats would arrive in astronomers' inboxes faster than research grants.

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Someonetoday at 7:38 AM

“We have no cure. I don’t want to know.” isn’t the same as “We have no cure. We as a society don’t want to know.”

People can be fine with being tested so that epidemiologists can work on growing our knowledge and, at the same time, not wanting to know their own diagnosis.

rossanttoday at 7:09 AM

I agree. I feel that many medical doctors do not share this mindset.

sandworm101today at 1:56 PM

These are 50yos, not elderly retirees. What if knowing caused your employer to deny you a promotion? Im in the military. This sort of diagnosis on one's file could have real impact on future prospects. People already fear ADHD tests for the same reason. I know a guy who is leaving the military after 20+ years flying transports. He is applying to airlines. If you were an airline, would you higher an experienced pilot with a positive alzheimer's diagnois in thier medical data?

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FrustratedMonkytoday at 1:33 PM

When can we get it?

I do want to know.

If it is positive, that is still helping you accurately deal with whatever is happening to you.

chaostheorytoday at 1:02 PM

Maybe if you can keep the results a secret from health insurance companies you’d have a point. However, not everyone has coverage under a large organization’s umbrella, and these people might be denied coverage.

vascotoday at 7:48 AM

Alzheimer isn't new. You should compare it with a situation like:

Imagine you're born and you eventually learn that there's an asteroid on a collision course with earth, from way before you were born. It's going to take many years to get here and you may die before it hits and so far no scientists have been able to come up with a way to deflect it. Do you care?

Adding newness to the situation makes it wildly different.

NedFtoday at 1:21 PM

[dead]

wordglyphtoday at 5:13 PM

Your gut bacteria is the prevention and the cure.

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