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I am NOT suggesting that the feds keep drugs unavailable for these patients.
What I AM saying is that protocols need to be put in place for informed consent, protocols tailored for these patients and families, and the protocols should be adhered to.
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Protocols? Why does the GOVT need to be involved...at ALL?? Drug companies can develop their own, or be sued into oblivion for negligence\fraud\etc. (far greater incentive to ‘do right’ than a govt mandate\busy-body, IMO).
What makes ‘these people’ any more *special* than the rest of us?
Whom *OWNS* you?? Any person wishing to be a guinea-pig should be FREE to do so, no? Be it for life-ending afflictions or hang-nails...
Keep in mind a bill is only the first step. Implementing a bill will require guidelines to be written by bureaucrats. Generally this is where some form of an informed consent requirements would be established. To expedite the bill, I would think the informed consent already used by drug companies would be a requirement. Unless the Feds already have a consent form on file using the current standards established by companies would expedite implementation, take the government out of the process and of course limit Federal culpability.