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> "Right To Try" is a return to legal snake oil. Is that really so bad in 2020, when we have access to the information we actually need to learn about snake oi

by jMyles 7y ago

> "Right To Try" is a return to legal snake oil. Is that really so bad in 2020, when we have access to the information we actually need to learn about snake oil?

mardifoufs 7y ago
Yes? Access to information does not mean access to good information. and even access to good information does not mean that people will not chose to believe debunked claims. We already have that now, but at least we can regulate what kind of claims are made and what kind of evidence is needed to make them. I'm usually all for individual responsibility, but health is one of the rare things where you can't just rely on people being rational. It is very difficult to expect rational decision making based on evidence when it comes to a dying cancer patient desperate to find a cure. And it's very easy to see people profit from that.
hcknwscommenter 7y ago
Under your scenario you will be targeted by extremely sophisticated psy-ops (think cambridge analytica *1000) to convince you that the super-snake-oil 2xt is the absolute best cure for your disease. Don't let the gov't tell you any different. Just look at this incredibly misleading data.
- jdminhbg 7y ago
  > (think cambridge analytica *1000) Zero efficacy times a thousand equals...
  - hcknwscommenter 7y ago
    Your confidence is misplaced. I mean look at those nigerian scams, they nab people every day and they are the worst in terms of efficacy. Now up the monetary incentive to BILLIONS of dollars, and remove the FDA, and you will find extremely sophisticated players entering the game. I really don't know where you derive your "zero" number from, but I'm guessing you are thinking it will have no effect on YOU. I actually help run clinical trials and regularly advise on clinical trial read-outs, and I can assure you that I could be fooled by a sophisticated scam if I didn't have a governmental entity that can and will actually do inspections and their own investigations with the power of criminal penalty. I think your confidence is entirely misplaced.
    - catalogia 7y ago
      > I mean look at those nigerian scams, they nab people every day and they are the worst in terms of efficacy. That seems like a bad example to support your point. Nigerian scammers don't strike at random like lightning. If you aren't really stupid or really greedy, there is zero chance that you'll get scammed by those guys. They target people with poor cognitive abilities and people who are greedy enough to think they can scam the scammers. They run dragnets looking for the rare individuals who vulnerable to their scheme. They are powerless if tasked to target a specific person unless that specific person by chance happens to be the sort of person their scheme works on.
- SpicyLemonZest 7y ago
  That is indeed a risk factor. I've seen a lot of people argue that there's no downside, that shoving the FDA out of the way would be a pure positive, and you're right to consider that very naive. But should we expect the FDA itself to be immune to such manipulations?
jacquesm 7y ago
Miracle cures are being hawked right here on HN. With that specific language.
ineedasername 7y ago
Yes, because that access is not uniformly distributed. There is a lot of disinformation, and your typical person doesn't have easy access to a lot of research sitting behind paywalls. Disinformation has much less friction, and requires much less effort to ingest, than quality research.

by jMyles 7y ago

> "Right To Try" is a return to legal snake oil. Is that really so bad in 2020, when we have access to the information we actually need to learn about snake oil?

mardifoufs 7y ago

Yes? Access to information does not mean access to good information. and even access to good information does not mean that people will not chose to believe debunked claims. We already have that now, but at least we can regulate what kind of claims are made and what kind of evidence is needed to make them. I'm usually all for individual responsibility, but health is one of the rare things where you can't just rely on people being rational. It is very difficult to expect rational decision making based on evidence when it comes to a dying cancer patient desperate to find a cure. And it's very easy to see people profit from that.

hcknwscommenter 7y ago

Under your scenario you will be targeted by extremely sophisticated psy-ops (think cambridge analytica *1000) to convince you that the super-snake-oil 2xt is the absolute best cure for your disease. Don't let the gov't tell you any different. Just look at this incredibly misleading data.

jdminhbg 7y ago
> (think cambridge analytica *1000) Zero efficacy times a thousand equals...
- hcknwscommenter 7y ago
  Your confidence is misplaced. I mean look at those nigerian scams, they nab people every day and they are the worst in terms of efficacy. Now up the monetary incentive to BILLIONS of dollars, and remove the FDA, and you will find extremely sophisticated players entering the game. I really don't know where you derive your "zero" number from, but I'm guessing you are thinking it will have no effect on YOU. I actually help run clinical trials and regularly advise on clinical trial read-outs, and I can assure you that I could be fooled by a sophisticated scam if I didn't have a governmental entity that can and will actually do inspections and their own investigations with the power of criminal penalty. I think your confidence is entirely misplaced.
  - catalogia 7y ago
    > I mean look at those nigerian scams, they nab people every day and they are the worst in terms of efficacy. That seems like a bad example to support your point. Nigerian scammers don't strike at random like lightning. If you aren't really stupid or really greedy, there is zero chance that you'll get scammed by those guys. They target people with poor cognitive abilities and people who are greedy enough to think they can scam the scammers. They run dragnets looking for the rare individuals who vulnerable to their scheme. They are powerless if tasked to target a specific person unless that specific person by chance happens to be the sort of person their scheme works on.
SpicyLemonZest 7y ago
That is indeed a risk factor. I've seen a lot of people argue that there's no downside, that shoving the FDA out of the way would be a pure positive, and you're right to consider that very naive. But should we expect the FDA itself to be immune to such manipulations?

jacquesm 7y ago

Miracle cures are being hawked right here on HN. With that specific language.

ineedasername 7y ago

Yes, because that access is not uniformly distributed. There is a lot of disinformation, and your typical person doesn't have easy access to a lot of research sitting behind paywalls. Disinformation has much less friction, and requires much less effort to ingest, than quality research.