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

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all morning because we also, I thought, agreed that
ownership was a bad way of looking at it and at least in
our mini-hearings found that most people did not have a
sense of ownership. That is not to say no one does but to
say by and large it is actually not the view that seems to
be dominant.
There has been spirited discussion and some
disagreement about not going back. Some of us believing
not going back is the right policy. Others worrying about
occasional exceptions.
The one thing I would like to raise, and I
think this follows up on Bernie's comments, is it is not
just a problem of informatics here, this layered consent.
One of the advantages, I think, the Breast Cancer Coalition
had, the same way that Heart, Lung and Blood Institute had,
is they are dealing with specific diseases going in.
The problem of writing a general consent not
for a specific disease is much more difficult I will submit
to you having tried it and I have encouraged all my fellow
commissioners to try it because it is not so easy if you
are going to take out -- if I go in for a breast biopsy,
first of all what happens if it comes out benign is the
disease that is similar cancer or is it benign breast
diseases. You are already making certain assumptions.