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Originally Posted by pegleg
I have been t hinking about this "one big trial" that you spoke of earlier. That doesn't leave a lot of room for confidentiality, does it? What if patients or trial participants don't want their information or trial results published? Wouldn't HIPAA have to honor that? Or do you sign away confidentiality when you participate in a trial?
Peggy
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You would never sign away confidentiality in a clinical trial, that is to say, no one should be able to name you or find you or trace you. It's that way now and has not changed - they publish (or hide) the medical results of one group compared to a control group; there is no way to detect who the individuals are.
As for the future in cyber-space, it's getting harder and harder to know where information ends up - Facebook is quite a horror for that, and soon there will be a camera and a computer in your eyeglasses, so everything you see can be instantly on the internet. But that problem, of confidentiality on the internet, is not just a problem for medical trials.... bank accounts, your past, your politics.... hackers get in. We may all have to live as avatars.
But as for clinical trials..... who you are is confidential.