Patient in training
Regarding the fact that BioBank participants will not receive individualized test results, this was a requirement by Genetic Alliance's IRB (Internal Review Board). I understand why patients, especially CFS patients, would want individualized results. I always wished that I could have results from the studies I participated in years ago. As I said, this is a requirement from the IRB, and the pros of creating a BioBank in this incredibly economic way have to be weighed against other interests/concerns. It is essential that any patient who donates to the BioBank be fully informed and give true consent. Each individual can and should make the choice based on the factors important to him or her.
ETA: As some of you may know I am a RN, I worked in chemo unit unto I got ill. We did lots of clinical trials there, for new drugs for cancer. While clinical trial is the last resort for the patients, their last hope for a cure or buying them time, the oncologists make it very clear with them that the goal of the trial (especially Phase 1 and 2) is to find out more information about the study drug, how the drug works in the body, what dosage is appropriate, what dosage is toxic. What are the side effects. More doctor visits are expected, more blood work, and more time at the clinic. While they may benefit from the drug, patients know that their contribution will be for the generation to come and not for their own benefits. They don't get renumeration whatsoever for this. Just the satisfaction that they have contributed to make a better world.