Entire Transcript in Adobe Acrobat Format - National Reference ...

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not. Most of these decisions for people of questionable
capacity really have a lot more to do with what someone
else thinks is in their best interest.
I think one of the things that I like about
this draft that I think we need to sharpen even more is a
willingness to say that family members by default, unless
shown otherwise, are the natural surrogates to whom we turn
for decisions about is it in this patient's best interest
to be a research subject. That is a big change. I mean,
if we are willing to say that leaving aside the -- it
depends on whether it is benefit and risk.
But, you know, Alex, to go back to what you
always reminded us sort of the history of this. I mean,
there is a school of thought that, you know, it was very,
you know, cogent, I think, that said, no, that you cannot
do anything to a subject without their free and voluntary
consent. It goes right back to the Nuremberg code. So
that if we are really saying a family member may consent or
may give permission under certain circumstances, again that
is -- and if we really involve the family members in a
meaningful decision as best they can make it, again I think
that is an incremental but substantial improvement.
As long as I have the floor I am going to just
sort of sneak in another point that is unrelated.