Orphan Drug

http://www.wuerzburg.de/biomed/english/news/717,5982.html?fCMS=024a2850c2024237491734558dbc61a6

"Orphan drugs" are medicinal products used for rare, life-threatening
diseases or chronically debilitating conditions where no other or no
sufficient effective treatment exists.

And it appears that this one, TGN1412, is the one that has caused serious
injury to the six men participating in the clinical trial at Northwick Park,
and may yet result in the deaths of some of them.

I do wonder why people take part in these trials. Is it just for the money
or is there a confident belief that if you put yourself in the hands of the
medical profession no harm can befall you? If you look at the Parexel site
you see, under "What's In it For Me?" a list as follows:
You may be helping friends and family by being involved in the development
of a new medicine or helping to improve an existing one.
You'll receive a thorough medical check up - FREE!
You'll be paid for your time and inconvenience.
Free food for the duration of your stay - and NO shopping or washing up!
You'll have plenty of free time to read or study, or just relax - with
digital TV, pool table, videogames, DVD player, and now FREE Internet
access!
You can even just catch up on some sleep!

I wonder what sort of form you are required to sign, and where the text of
it might be found? I wonder whether the participants give truly informed
consent?


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