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Comment by op00to | Hacker News Reader

Why shouldn’t people be able to submit themselves to experimentation?

I could imagine that in practice you end up with a bunch of vulnerable people submitting themselves to experimentation by powerful companies, which is an unhealthy dynamic.

I agree that it could be an unhealthy dynamic but who should ultimately have the power to make that decision? The patient who wants to participate in a trial because it may offer a chance of improving his quality of life, or us?

Beyond that, allowing for these experimental trials, regardless of their success or failure, can accelerate medical progress that can enable better care for many more people in the future.

That's what I see a lot with Cancer drugs. People are dying and want to take a chance on really experimental stuff but the FDA will deny it. They want to try it because it could help them, or if not, at least help others by eliminating useless paths.

It's so strange that people feel it's wrong for patients to make their own choice on this, but they are okay forcing others to not have treatment. It's a "My decision is better than yours, I can decide what is better for you.

There are regulations in the us to protect human subjects from undue influence.

Agreed. People should have a strong right to repair that gives them liberty over hardware and software in their property especially in their body. Anti-cirumvention ought be illegal by default. The law should protect people from being prayed up on by controlling interests. Would that.

Why shouldn't people be able to submit themselves to ride on an experimental rocket ship that has known issues and is not expected complete its mission?

If they're aware of that, I don't see the problem?

It's not so much allowing people to sign up for it, it's preventing companies from killing and maiming people in the interest of profit. Because that's literally what it is. There's not a big asterisk in our laws next to murder that says "oh, unless they're cool about it".

You have some very confused ideas about risk and the concept of voluntary behavior.

All of the animals that Neuralink killed would beg to differ.

That is a good question, people should absolutely be allowed to do that if they want to. Sign a consent form, why not?

You can consent to be murdered but that doesn't make the company murdering you free and clear to murder you.

Ever heard of euthanasia?

1. Euthanasia is supposed to work and not have a chance of horrifically painful outcomes.

2. Companies don't get to benefit from you being a test subject as a result of you being euthanized.

3. The upside of euthanasia is getting to die. The upside of what's happening here is maybe getting to have a cool gadget for a little while until your brain implant falls out, and then who knows what kind of terrible injury you'll suffer!

Neuralink and similar tech has substantial life changing implications for its users. It’s not a gimmick

Those life changing implications would be great if the devices didn't kill their hosts or fall out. Being life changing doesn't give Neuralink a pass.

>The upside of what's happening here is maybe getting to have a cool gadget for a little while

That’s not a good faith statement of the upside of a neural implant.

The upside of having a neural implant is that the quality of life for a quadriplegic person is greatly improved for as long as the implant lasts, which is potentially indefinite, if the device works correctly. It’s not a “for fun” project, see the video here for a real demonstration of this man’s life being improved: https://youtu.be/5SrpYZum4Nk?feature=shared

A man who is paralyzed from the neck down being able to use a computer fluently again and do things like play his favorite video games is a huge upside.

You mean “experimental submarine.”

But the steering wheel is a cool joystick!

Well, they do, down to the titanic..

Because desperate people will be taken advantage of by people trying to make a quick buck. That includes pharmaceutical or medical device manufacturers who are answering to investors.

This is why universities have institutional review boards and it’s broadly forbidden to conduct experiments on prisoners.

That's FDA's role, to be the gatekeeper to make sure trials and experiments meet acceptable safety standards. Worth noting that FDA has allowed Neuralink to have the 2nd patient in the coming month.

Experiments on prisoners are nonconsensual, so it doesn't map to cases like this.

Do you think broader society should be able to impose any limits? Is there any experiment too stupid to countenance?

There are limits in place. All human testing in the US is reviewed by an Institutional Review Board and covered by numerous regulations.

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