I think this is a really important topic (clinical trials).

There is a group of people, including, at least, on this forum Paula and JeanB, who have been working hard to craft a document that will protect the rights of patients in clinical trials, and thus, hopefully, make the prospect of joining one more palatable.

It is a complicated issue. Take "risk" for example. It is a concept without one, single meaning. Maybe people with a life-threatening disease would like to be able to accept more risk when entering a trial. How does the system balance risk? Can they make a completely risk free trial? Should they? How do we make sure that participants actually understand the risk they are taking? (i.e. the woman who just died from the gene therapy treatment - did she really understand the risk? if she did, would she have signed on? would a person whose life was at stake be willing, and be allowed, to take more risk?)

JeanB makes a wonderful point in her thread about her experiences as a participant in clinical trials, that "It's easy to talk about the problem. It's harder to be part of the solution."

Being part of the solution does not necessarily mean signing up right now for a clinical trial. It also means helping to make the system better for patients so that more trials can go forward more quickly - and maybe making you feel more at ease in joining a trial yourselves.

If you don't feel comfortable joining a trial, or even if you do, please think about participating in the process by letting your views be known by giving your input at

http://pdpipeline.org/aboutus/request.htm

Thanks to Paula, JeanB, Carolyn, and anyone else who are using their time, talents, and bodies to advance our cause!