It's immoral in a lot of cases, but is it immoral in every case? I don't think so.
Take a person who has a heart condition AND cancer that is 100% certainly going to kill him within a month and has no close family/friends to spend his dying days with. Would it be immoral for them to take a 1% chance of losing a couple crappy weeks to possibly make a huge step forward for science?
These things need to be wielded judiciously, but there are cases where the rewards outweigh the risks to a point a person of sound mind should be able to take the risk for the benefit of humanity.
I'm not involved in research, but recall that ethics review specifically looks for beneficence towards participants, the notion that participants themselves have risk minimized, and that one cannot pursue information to their detriment.
I’m a responsible adult who believes in personal responsibility. Provide the data around efficacy and risk, and allow me to make the informed choice myself.
I am okay dying if I make a mistake in my risk assessment. I would not make the choice for someone else.
Everyone dies. Progress is inherently risky, but necessary.
So long the "informed consent" really is truly informed, and not something that is slanted or otherwise concealing evidence or data. In that case, then I do not disagree with you.
However, considering what we know of how PR and Marketing works, I am inclined to err on the side of "Abundance of Caution and Due Diligence", even in the face of personal responsibility.
Definitely. Making the marketing of pharmaceuticals directly to consumers illegal would go a long way, as well as stronger oversight and governance by regulatory bodies.
Informed? How could you possibly make an informed choice without both a Ph.D. and an M.D. and a decade of experience in drug development in the exact same field? Even then, most developments considered highly promising by teams of people having that exact background end up producing nothing useful. And you just want "the" data around efficacy and risk and to make your own decision. Are you supposed to get real-time updates as each new data point comes in? It just makes zero sense to me.
You are basically not qualified to make that decision. There is no amount of informed consent for either the known unknowns or the unknowns present in say a clinical trial. It would also be a net negative to society because we would get no information outside of proper studies and it would be a huge waste of money.
As immoral as giving a placebo instead of a curative treatment to someone to fulfill the standards of a test?
In the case of medicine research, I think it's OK to let people dictate their own moralities. Try to reduce the chances of abuse, and start increasing results.
Everyone's fine with human casualties as long as they're not the ones doing the dying.