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.
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).
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.
That is exactly how clinical research works. My mother worked running clinical trials for two decades.
When she was diagnosed with leukemia she was able to get into a research study herself that gave us 10 more years together.
One of the horrible but necessary parts of trials is the control group, who receives placebo. This is only done in a few of the trial phases but is essential in measuring efficacy. If someone wants to throw their brainpower and a little bit of AI/tech at the problem, you could end up eliminating a lot of suffering.
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.
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.
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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.
That is exactly how clinical research works. My mother worked running clinical trials for two decades.
When she was diagnosed with leukemia she was able to get into a research study herself that gave us 10 more years together.
One of the horrible but necessary parts of trials is the control group, who receives placebo. This is only done in a few of the trial phases but is essential in measuring efficacy. If someone wants to throw their brainpower and a little bit of AI/tech at the problem, you could end up eliminating a lot of suffering.