Comment by hn_submit
13 hours ago
These tests are more or less useless because there's no treatment anyway so knowing about it a long time in advance will not lead to any substantial gain. Even slowing the disease isn't within the realm of today's technology. Today's pharmaceutical companies are close to quacks as far as Alzheimer is concerned. We know next to nothing about its origins or even how the disease progresses.
The only thing you gain is giving people more time to worry and despair.
Earlier diagnosis, or at least suspected diagnosis, could make a difference in studying progression, origin, etc.
Imagine the test is 100% accurate: if you gave it to a group of people, you could then try to make interventions earlier, capture more data about lifestyle before symptoms, etc.
Patients becoming involuntary guinea-pigs for science? No thanks.
As long as there isn't a clear root cause found and some real mitigating medicines reach the market I would propose keeping people ignorant as long as we can.
Taking an optional test is voluntary.
Entering a study for people who tested positively would also be voluntary.
Anecdotal responses in this topic indicate there may be some mitigatimg medicines.
Demanding a root cause before doing anything is silly. Finding root cause in biological systems is incredibly difficult; there's value in finding symptoms and managing symptoms without finding a root cause. And dangers of focusing too much on any one indicator.
That's not to say I suggest everyone be screened for everything. If there are limited mitigations, it's not appropriate for most people to be screened. But even if there are no medical mitigations, you might put your affairs in order with appropriate urgency if you knew your cognition would be much reduced in the next 5-10 years.
This is a very poor take. My family has been affected by the disease. If I get it I would join research as it could potentially help my kid and other family members.
This is how science works. There are studies all over the US which involve existing patient and many join to help themselves and those who will come after.
I think I'd want to know.
It would affect my financial and estate planning, and how I'd like to navigate the disease's progression.
This is an infuriatingly clueless comment. It gives nothing? It allows people to set their affairs in order, and that is an invaluable thing.
Alzheimers can lead to all kinds of other issues like impulsivity, or aggressiveness. People gambling away their life savings, not knowing that they are even doing it. Doctors unable to intervene due to rights around patient autonomy. All of this has big consequences in the lives of those affected.
When the symptons set on you'll have plenty of time to wind down your affairs.
And much less ability to handle the task.
These tests are not useless, but I’d agree (from personal experience) that it’s far from clear that everyone should take one.
There’s a degenerative genetic disease that runs in my family that for various reasons we only found out about ten years ago. To get the test done in the UK for it, you have to go to mandatory genetic counselling where they try to convince you not to get it done. Of four siblings, the two of us who thought initially we’d definitely get it done, we’ve not, and the two who were sure they wouldn’t, have done.
They try and convince you not to get it done so you don’t end up confusing being tired one morning or tripping with “oh my God it’s starting”.
Everyone should get their affairs in order, regularly, without needing a test, if they care about their loved ones.
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