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Comment by gimmeThaBeet | Hacker News Reader

I agree, or at least I would stress that people should be allowed to consent to that. I don't know what the prevailing medical ethics of doing that kind of thing in consenting patients in that state, but my uninformed intuition is I would disagree with it.

Though one thing that I might think researchers might not want is people may be too sick to recover even if their cancer disappeared tomorrow.

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Both patient participation in clinical trials and compassionate use of experimental treatments are fairly common for cancer patients, with various accessibility barriers. (One issue with the latter, for example, is that the incentives aren't lined up for companies to provide unapproved drugs to dying patients, you're way more likely to get a horrible complication that leads to bad press than a miraculous recovery).

Here's an insightful blog series about Jake Seliger's experience participating in clinical trials. He was a regular HackerNews user who passed away in 2024: https://bessstillman.substack.com/p/please-be-dying-but-not-...

What is the success rate of a clinical trial? Just to see things in perspective.

It's around 10-15% for the whole drug I-III flow (13.8% according to [1]), but that varies dramatically based on therapeutic area. On the order of a third of infectious disease vaccines might be approved but only maybe 5% of oncology therapies because the latter often have a different standard for approval so it's cheaper to run trials.

[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6409418/

That's interesting, but I was talking about the success rate of someone with a terminal illness going the clinical trial route. Sorry, I now see that my question was not so precise.

For cancer, it doesn't seem to impact survival odds at all [1]. In other fields it may improve metrics a small bit but that's largely because in clinical trial patient selection, they're very careful to exclude anyone with an even remotely confounding factor (like weight/BMI).

[1] https://www.science.org/content/article/joining-cancer-trial...

This is why people begging to take untested, unknown drugs in the extreme off-chance of they work is generally a bad approach. It almost never works, and it encourages the earlier release of ineffective drugs to a wider audience.

If someone is about to die and you save them at the last moment, aren't you basically reviving a zombie at that point? He has eight new tumors. You can pop almost all of them and still be left with a terminal patient.

Even if you're buying time with every trial, all you've done is turn the patient into a lab rat for physicians to play around with. The ideal patient needs to be dead enough to have no human rights, but alive enough to participate in the trial. The hope of a miracle cure means the patient doesn't believe himself to be dead enough to not have human rights anymore. It's a paradox.

Signing the documents for such a trial is equivalent to signing your consent for euthanasia. It shifts the blame of death from the cancer to the company performing the trial. It's an extended form of organ donations where you donate your entire body while you're still alive.

Jake Seliger died ten weeks before his daughter was born. For many people, a chance at buying some time is worth a lot.

Trials are also by no means exclusively performed on terminal patients.

In the US, the FDA has a Compassionate Use exemption to clinical trials for exactly this circumstance!

There must be informed consent, no reasonable alternatives (which, in cases we deem terminal, is often the case), and some evidence pointing to the treatment possibly being helpful. It's an excellent ethical program that gives patients a choice and advances science.

In my experience most legitimate biotech companies working on promising drugs and therapies don’t want to touch the exemption with a 30 foot pole. Since they raise most of their money from the public to fund clinical trials, a single bad reaction could generate enough bad PR to derail fundraising and kill the drug. Sticking to clinical trials allows them to control that blast radius so even though the FDA approves >95% of applications, in practice very few drugs are available that way.

The biggest exception is oncology. Since everyone knows that chemotherapy is hell, cancer drugs tend to get a pass and pre-approval companies are (slightly) more willing to work with compassionate use exemptions.

Both of my parents have benefited from access to early medical trials. One is currently very late stage IV cancer. Access to trials is usually proxied through respected doctors/oncologists affiliated with major hospitals rather than offered broadly. I assume for reasons of experimental protocol and integrity the overseeing doctors are typically not the same as the conceiving research team.

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