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

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this used in this way or that way, you get a very difficult
storage problem. You get a very difficult coding problem.
You get a very difficult transfer problem.
So as much as we wanted in the clinical setting
to layer the consent form and as much as we wanted to give
choice to the participant donor we opted because of the
practicalities for two choices, "I will participate and my
tissue may be used for cancer research, my tissue may be
used for other research." And even with that the pathology
community is very concerned.
NCI is working with them now on costs and
management of the process.
So there are costs to pathologists that is real
time and money in clinical practice. There are costs to
the surgeons in real time and money in adding anything to
the standard consents that they now use which we deemed
totally inadequate for the purpose.
And then we have come to learn that in clinical
practice pathologists will routinely throw samples away.
If what we are truly concerned with is the value of
archived tissue as a national resource then, in fact, we
have a problem about not only keeping the codes right but
keeping the tissue properly stored for use.
(Slide.)