Vicky,
I absolutely agree about this research being in it's infancy, which is why their should be good trial models - maybe the old ways of trial design need to be wholly rethought, and then of course research should be shared, I cannot for the life of me see why genes should be patented and belong to corporate entities, which will mean exclusion for reals beings somewhere along the line, mostly by way of economics. All this knowledge belongs to the entire world, it is unethical and bad for humanity to corner the market on knowledge and filter it through in the most highly profitable way possible - especially when the market in question consists of sick people.

Personally I cannot see a cure coming for me, and I do not think that these companies are remotely interested in what patients views are, so long as we keep consuming their products. Research is a different matter altogether - in the case of researchers there is no choice for them, their ethics are compromised before they are even engaged in the research, because of the way our world is ordered. I would settle for treatments that improve quality of life anytime, while the industry slowed down and did the research carefully, ethically and with the interests of patients central to their aims. However the likelihood of that happening is almost as remote as a cure arriving in time....

Vicky I cannot disagree with anything you say other than that the voices of the suffering is what sweeps science away. There is plenty to show that science itself is often compromised to all the things I have mentioned above,
with the picture being skewed to corporate vision. I am unable to see through that lens. It is simply too distorted.

Lindy