It can be frustrating, but the rules weren't created in some blind bureaucratic power-grab. They're responses to actual problems that existed in their absence. They aren't without their downsides, but they remain better than the alternative on balance.
I'm sure you mean well, but this type of thinking really bothers me.
For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as lay people.
However the central issue is a medical doctor is not even qualified enough to choose, due to malpractice liability. On top of that even a specialist can find difficulty prescribing experimental treatment lawfully, unless it's part of an FDA trial. This is in addition to the incentives drug companies push. [1]
I speak from first hand experience dealing with Psoriatic Arthritis and establishment CYA (cover your ass) thinking. After spending $1000+ per month on Anti-TNF blockers [2], I'm doing just fine on lifestyle changes and have seen no disease progression after 3 years of being off meds. I wouldn't bother mentioning it if it weren't for the thousands of credible patient stories that point to fixing what we eat as a means to being healthy. Yet the paradigm for the last 30 years is one of treatment, not prevention.
Guess which makes more money for Pfizer, GSK etc? Hint: it's not vaccines (prevention). Chronic treatment (autoimmune, psych drugs, cvd etc) are dominating the top 10 sales charts. [3]
I would feel incredibly angry and upset if myself or someone close to me, were in a position to try an experimental cancer treatment, but were unable to, because of regulatory snakes and ladders.
I'm not saying the FDA is useless or provides no public benefit, but I would question the wisdom behind entrusting authority of one's life, to a single decision making body.
[1] http://www.nytimes.com/2011/11/25/us/payments-to-doctors-by-...
[2] http://en.wikipedia.org/wiki/Etanercept
[3] http://en.wikipedia.org/wiki/List_of_largest_selling_pharmac...
The fact that you think critical reasoning can help discriminate between a quack and someone selling real medicine indicates you don't have the ability to make that distinction.
The truth is, no one does. It takes a process with many checks, and even then snake oil makes it through.
Hell, the same people who make real medicine can have a lapse of judgment and make phony medicine. No one could tell, even their peers, without verifying the experiments performed.
It's not a far-fetched scenario. Prominent researchers fall from grace several times a year. Multinational drug companies sell medicines that perform worse than placebos.
What utter nonsense. If someone presented you with a homeopathic dropper [1] saying it would cure cancer vs a new gold nanoparticle experimental therapy [2], "no one" would be able to tell the difference?
While the new treatment may turn out to have issues (no one was suggesting experiments were risk free), to imply it's indistinguishable from quackery, is false.
Ah, how did we miss such an obvious fact! Of course we computer scientists are naturally smarter than all the other laypeople.
I tend to dislike elitist thinking (or though I'm still guilty of it at times), not for moral reasons, but simply because empiricism, in my admittedly subjective opinion, is routinely lauded over common sense in nerdy communities (HN, slashdot, SO etc), and is often a form of bias. Having a bias doesn't mean one is wrong necessarily, but it can be problematic too, especially if one lacks cognizance of said bias.
For example, my gf is the furthest thing from a computer scientist, but is routinely more observant socially and can spot bullshitting better than I in certain contexts (among other superior cognitive skills).
However in the past I've tried to pick too many battles in one post, and that makes it difficult for someone to upvote, as they may agree with some, or one point, but not another and creates a mixed cognitive dissonance. Hence I didn't want to launch into a large foray of intellectual elitism.
Hence the aim was, for the most part was to try to leave epistemological disputes (how do we know what we know, who knows what etc, do all groups have equally justified beliefs?), out of the debate and focus on the regulatory side of things and empowering the individual to be allowed follow their own life and death decisions.
That said, perhaps I could have left the opening paragraph off altogether in retrospect.
The gullible are already getting snake-oil in the form of herbal remedies and homeopathy.
Ben Goldacre's book Bad Pharma details the serious personal and social costs that come with poor drug trials. Everyone urging the abandonment of caution here seems to assume this new drug already works or, at the very least, the effects of its usage could not be worse than the grim prognosis patients already confront. But that's what proper trials are meant to establish. Snake oil can come in pill form, too. And even with the current precautions, we've ended up with a number of ineffective, expensive, and sometimes deadly drugs on the market.
As with the drug war, we drive people into being basically criminals when they're in reality suffering from a medical condition.
So rather than being allowed to experiment with extremely desperate volunteers who could likely one day provide some real EUREKA therapies, we send those folks to the dark side where they're much more likely to spend a great deal of money and be taken advantage of.
That's a huge practical loss, but an even greater ethical loss. At its very core, we are throwing away people's right to choose what to do with their own bodies. Being okay with that ethical tragedy is like being okay with rape or torture for some poorly proven "greater good".
http://www.scientificamerican.com/article.cfm?id=snake-oil-s...
That's not a credible claim. Tell that to either of the two people that left those comments.
Sure, there's risks inherent with experimental drugs, but these people are dying or losing loved ones. They don't give a damn, and none of us has any right to stop them from taking those risks with their own persons. Their bodies are their own, they are not yours.
And frankly, the snake-oil salesman claim strikes me as little more than FUD. People can get recommendations from multiple MDs before making up their minds.
Why is it morally acceptable to have laws intended to help the people that don't care to tell the difference? Those laws come at the expense of those who do care, who take the trouble to figure things out.
Why shouldn't we live in a free society where the best within us can make a difference, and take humanity forward?
So because some people will be duped, let's doom everyone to death.
