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

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DR. CHILDRESS: After again Alex and Bernie, I
am going to also ask Trish, who has been one of the major
advocates for some kind of research advance directive in
our subcommittee, to offer some views because we are
hitting mainly the critical points and I want to get the
positive ones.
Alex, and then Bernie, and then Trish.
MR. CAPRON: Zeke, I share many of the concerns
about advance directives in end of life care that you have
articulated. I do think it is worthwhile not being
confused by the similarity of the phrase "advance
directive" to import all of those problems to this area for
several reasons.
Before I get to the reasons let me make one
other preparatory comment, which is the problem always of
the best being enemy of the good. I fully share with you
and have spent years and years writing about the difference
between the consent form and so forth and informed consent.
Our ideal ought to be an ongoing process of
conversation between investigator and subject. Where that
is not achieved the question is what do you do instead. Is
it better to go ahead with an experiment that has no
potential benefit to a mentally impaired subject who has
never been asked whether or not if unable to give