At 3:52 PM, PmH said…
It seems unreasonable to expect anyone to be capable of signing an informed consent form unless they understand the planned test, the risks and the legal remedies.
PmH quite rightly pointed out that I basically ignored one of the important points of this article:
Guinea pigs do sign “consent forms” that detail the risks; but Tom Edwards, a 21- year-old from Oxford who took part in another Parexel trial, pointed out that his form was 15-pages long. He said he felt “pressured” into signing the form and eventually did so without reading all of it “because I felt like I was slowing everyone down”.
I don’t think anyone could have predicted the side effects of TGN1412, but even ordinary trials can be fairly hazardous. Participants need to understand the potential risks and feel that they can refuse to take part if they feel the risk to be too great — this is basic informed consent.
High school science leaves most of the population ill equipped to deal with a 15-page form which was most likely written in the worst combination of science lingo and legalese imaginable. Tertiary science leaves scientists ill eqipped to write consent forms that the general population can understand, and therefore give informed consent to. Either way, the onus lies on science educators to lift their game and level the playing field somewhat. Obviously there is a need for technical language, and every type of specialty, whether in philosophy or physiology. But there’s a time and a place for it.
On the other hand, the average citizen could use a better grasp of science. The same people who don’t understand consent forms also don’t really understand the science they read in the newspapers, or its implications to their lives (unless the particular science journalist is better than average). Their way of verifying scientific hearsay is to go through their catalogue of anecdotes until they find a situation that confirms or denies the report. And they believe that intelligent design is a plausible alternative to evolution.
For its own good, scientists need to teach better and communicate better; really these are both the same thing.