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

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DR. MURRAY: Zeke, can I make just one point
that would go for all of the -- particularly the ones
collected in terms of clinical care?
DR. EMANUEL: Right.
DR. MURRAY: Whether previously or now. If
there is on the record that a person did not want their
tissue used for research that preempts any possible use.
We do not -- we did not specifically note that in this
table but that should be noted.
DR. EMANUEL: The other thing to note is that
we heard from Bartha Knopers that in Europe or at least in
the Netherlands they were going to a presumed consent with
an opt out. For our reasons we had thought and discussed
why that might not be good and it might encourage sloppy
record keeping if you could not identify a record and other
reasons.
So I think, in general, we are moving to having
the general consent process and we had thought through some
of the problems and difficulties because we had heard from
some of the people in our mini-hearings about the fact that
they do not remember even signing a consent form and they
felt coerced, et cetera.
Now without going through each of the boxes, I
mean we can again try to discuss --